June 10,
2014
Friends and family,
Yesterday our sweet son Graham was in a terrible accident. His head was run over by a car while playing at a friend's house, and was life-flighted to the hospital. While his lower body is in near perfect health, Graham does have extensive skull and facial fractures, as well as multiple contusions on his brain. Yesterday evening neurosurgery placed a drain into the center of his brain to help with swelling and pressure, and a team of doctors is currently planning his next major surgery, to take place later this week or early next. His vital signs are all good right now, although he is sedated and on a ventilator in ICU at Children's Medical Center in Dallas.
We love Graham with all our hearts, and are so grateful to the outpouring of prayers and support that he has already received. Last night I felt a wonderful peace as I came to feel that all of our prayers were already being answered, and that our loving Heavenly Father is pouring his blessings out on Graham and the rest of our family.
I ask all of you and yours to pray for Graham, that his pain will be lightened, that his doctors will perform with absolute expertise, and that his healing will come with speed in accordance to God's will.
- Lindsey Roth Kormylo
Graham Update Day 3 (6/11/14) am
Today will be a day of rest for Graham with no significant changes to what's happening as far as his treatment as his body catches up to his therapy. His BP, hemoglobin, pulse, brain pressure, nose and ear drainage, and stimulus/response mechanisms are all right where they should be right now. The ICU doctor said his color looks much better.
He is sitting more upright in bed - almost to 90 degrees - to help with his facial swelling. Today the name of the game is:
1) continue to monitor coagulants in his blood to continue to allow the drainage in coming out his nose and ear to stop.
2) continue to fight off potential hospital-born infections.
3) help to reduce swelling in his face and continue to fight swelling and high brain pressure.
Graham
Update Day 3 (6/11/14) pm
Today has been a good day for Graham. His blood pressure, pulse, brain pressure, hemoglobin, etc. were consistently within their desired ranges. Today we sat him more upright to help with his swelling. While still medically sedated and on a ventilator, he still moves his arms and legs when he gets uncomfortable. Today at one point he raised both arms nearly to his chin and crossed each one to the opposite side of his body. Several times he crossed his leg over his opposite knee to get comfortable.
His nutrition was moved from an IV to a feeding tube. This will ultimately help keep his digestive system working and make sure he has more balanced nutrition.
When he gets agitated (when the nurses change his C-collar, clean his wounds, or check his eyes) he calms almost instantly when I put my hand on his chest and remind him "big Daddy is here." He can still squeeze my hand hard with both of his hands, although only in response to discomfort and not on request.
Since arriving at the hospital his eyes have gotten to the point that both pupils are fixed and not responsive to light, as they were when he arrived. This is consistent with swelling around the optical nerve, and the pressure in both of his eyes are normal, so we are cautiously optimistic that he will regain his vision.
His next "big surgery" will likely take place mid to late next week. It will involve a team of pediatric surgeons from varying fields of expertise. Please pray now that The Lord will steady their hands and bless their minds.
Please continue to pray for Graham. He is taking baby steps down a long road which will likely include a hospital stay of anywhere from 2-6 months. And while the road is long, I am confident and hopeful that because of all your love and prayers God has placed Graham on a road that will lead to a full recovery and a life full of Legos, Star Wars, Sharks, Dinosaurs, and a wonderful career as a Zoo Keeper.
God bless all of you and you families. And thank you from the bottom of my heart for your friendship, kindness, love, and prayers.
I met with the woman who hit Graham. She is the mom of two of Brode and Graham's best friends, and she is a sweet, heartbroken lady. I will forever be grateful that she had the presence of mind to keep Brode from seeing the accident when he got back. She saved my boy from a lot of emotional trauma.
After meeting with her I think I finally understand better what happened, and also got to get a look into how amazing and strong Graham is.
The four kids were playing together, and decided to get Popsicles from a friend's house. Graham didn't want to go, so he stayed back. They had been laying out on beach towels, and we think Graham decided to hide in the towels on the driveway and jump out to spook the other kids when they got back.
As the mom came home, she pulled first into the Alley and then started turning into the driveway. As she approached the driveway her visibility to where Graham was laying was blocked by the fence around the back yard. She hit the garage door opener, and then saw it was already open and hit it again. During the moment when she checked the garage door she must have missed Graham, and rolled over his head with her left front wheel. She thought that she had hit a bike, and when she got out of the car, the amazing Graham, our superhero, had pulled himself out from under the car and was lying a foot or so away. He was calm but shocked, reaching to his face for his glasses, and eventually began to slip in and out of consciousness as the paramedics and Lindsey and I arrived, followed shortly thereafter by the helicopter.
Last night was another good night for Graham. He has now been off his blood pressure medication for 16 hours and his BP is staying up at a healthy level (110/60). He has also started to take small amounts of formula directly into his small intestine through his feeding tube. He started taking lipids (fats) and something else I can't pronounce through his IV, and they will gradually transition that nutrition to his feeding tube as well, depending on the ability of his bowels to handle it. He has little splints for his hands to keep them from getting locked into one position, and on his feet they alternate a massaging boot to help with his circulation, and another boot that is rigid on the outside but plush against his skin to align his feet and keep his range of motion up.
He is also getting blood through an IV infrequently but regularly to help keep his hemoglobin up.
Our next goals are as follows:
(1) Start turning Graham to help keep his lungs in top shape. This is a challenge - doing so would cause Graham a lot of pain, and so they would want to give him more medication before they do. The problem is his blood pressure drops when he is on Versed, and some of the other drugs are "hit and miss" for Brain trauma patients.
(2) Get Graham an MRI. His neurosurgeons want to get another look at his head and also see if they can remove his C-collar, which will help with his swelling. They will need to sedate him more for this, and also lay him flat. They are not sure if his brain pressure can handle laying flat yet, so they will test him out in his room first and then make a decision.
3) Continue to progress in terms of swelling and draining from his ear. His first night (not a full night) he drained 110 cc's of fluid through his ear. Last night it was 5. This is great progress as they would like this to be 0. They also tested this fluid and it is NOT spinal fluid. They did not expect this. They are going to test the leakage from his ear and nose again, and if it comes back negative again it will truly be a miracle.
Graham is starting to move his right leg more, and he moves both of his arms symmetrically, which is great. He is still strong and gives me a good squeeze when I hold his hands and they "bug him." He still crosses his left leg over his right knee to get comfy every now and then.
In the middle of writing this update I visited with his Doctor. He let me know the plan of action, and he said he feels we are very lucky as far as Graham's brain pressure is concerned. Normally during a brain trauma like this a patient in the 24-72 hour window would be in a tough battle with his brain pressure. Graham seems to have already climbed that pick. This is great news, but I know Graham is not lucky. He is blessed by God because of all your love and prayers. Please keep them coming - he is in critical condition with a long road ahead, and he definitely needs them. Lindsey Roth Kormylo
— at Children's Medical Center.
June 12
Mid afternoon
Graham has tolerated laying flat for 45 minutes in his room, which is what it will take to get an MRI. He has also taken Versed again with no drop in his blood pressure.
Graham will have an MRI later this afternoon to confirm the health of his neck (and hopefully remove C-collar), check blood vessels in his brain and face, observe the contusions in his brain, and check the swelling.
We are praying that this MRI will reveal great progress and confirm what I know to be positive outlook on the future.
Graham
Update Day 4 (6/12/14) pm
Another solid day for Graham Hopper.
They started the day off by trying to lay him flat to see if he could handle an MRI. He laid for 45 minutes with no significant rise in his brain pressure, and he had been off of blood pressure (raising) medication for some time, so they felt comfortable scheduling the MRI.
As they started to get Graham ready for his MRI, his blood pressure did drop a bit lower than they would have liked, but they were able to manage it and get him down without much of a problem.
His "road trip" down to radiology lasted about 3 hours - it takes a village to move a boy with so much going on in by the way of medications and monitors. But he did great and only spiked a small fever during the MRI, which was quickly managed. He had no other complications.
Then began the waiting game - when would we hear from neuro or radiology? His day nurse - the best, most carrying and gentle nurse on the planet, did give us a little sneak peak. She said as they were scanning and looking at Graham's neck and brain, the radiologists asked what had happened to him. When she told them, they did not believe her. His brain simply looked too good for a boy whose head bore the weight of the front wheel of an SUV. They were all pleasantly surprised at how well his brain looked. His Nurse said "I've seen a lot of good brains and a lot of not-so-go brains, and his is lookin pretty good."
About four hours after Graham got back, neurosurgery finally came in to give me an update. They were mostly looking to confirm the health of his neck - they want to remove his c-collar if possible to help with the swelling in his face. The MRI showed a fluid between some of the neck joints, but otherwise strong muscles, joints, and ligaments. They have now loosened his c-collar with the hopes of removing it soon. No real prognosis was given in respect to his brain and eyes, although they said the contusions on his brain are stable and he has good blood flow into his brain. Additionally, there is nothing that requires immediate surgical attention, so it now looks like his major surgery will take place in 1-2 weeks. Between now and then, they will work towards reducing his therapies, getting him off a respirator, and reducing his swelling so that he can be as strong and self-sufficient as possible before his next surgery.
Last bit of progress for the day - they did successfully turn him onto his side, which will help the health of his lungs throughout his stay in the ICU.
The gameplan for tonight will be to turn him every two hours, and gradually reduce some of his medications as we get ready for surgery in the next week or two.
My wife and I cannot thank you enough for all your love, prayers, help, and support. I'm sort of in "game day" mode with Graham. I'm excited by his progress and ready to help him with each and every step that remains. I've shed a lot of tears for him, but those tears have turned to hope. I turn into a crying,weepy old man-baby, however, whenever I see the touching thoughts and acts of charity and love by all of you. I simply will never be able to adequately thank you for how much you all have blessed my life, Graham's life, and our whole family. Thank you all from the bottom of my heart, and please continue to pray for Graham.
Graham Update Day 5 (6/13/14) AM
Last night began with the confirmation that
Graham's neck is in good shape, so they loosened his c-collar. We were
disappointed to not learn more about his brain, but we will take whatever good
news we can get. I spoke to his neurosurgeon this morning and he let me know
that the c-collar is coming off today, which should help with the swelling in
his face.
They tried to take Graham off a drug that
regulates his urine flow (swelling in the brain squeezes the pituitary gland,
causing too much peeing) but they had to put him back on it. His Dr. said that
he is taking 75% less of the drug than he was a couple days ago, and they will
try again to gradually take him off of it over the next 48 hours.
Graham's lungs are also doing well, and they
were able to turn him every two hours overnight. The goal over the next 72
hours is to keep his lungs clear and healthy, and take him off the respirator.
He will still have to go back on it after his surgery, but the goal is for
Graham to get as healthy and self-sufficient as possible before his big day.
To that end, they are also preparing to remove
his catheter. His doctor said "let's get him poopin" so that's what
we are going to do.
Graham's pulse also continues to get down to a
more normal level. It was 170-180 on Wednesday morning, fell to 150 by
Wednesday night, was 125 yesterday and has been under 120 so far this morning.
This is a good sign that his body is normalizing.
Time is the name is the game now and his goals
over the next 72 hours are as follows:
(1) Keep Graham free from infection.
(2) Decrease swelling in his brain and face.
(3) Keep Graham's lungs clear and get them
breathing in their own with regular turning and vibrating chest massages.
(4) Continue to move Graham and keep him free
from bed ulcers.
(5) "Get him poopin."
(6) Gradually scale back his therapies and
strengthen his body's ability to be self sufficient as Graham gets ready for
surgery.
The last little bit of news that his doctor
shared with me from his MRI this morning: not only are all the blood vessels
INTO his brain healthy, but all the blood vessels IN his brain are healthy too.
Still a lot to learn about and overcome as far as his eyes and the contusions
in his brain are concerned, but this is truly a miracle. My little Graham
pulled himself out from under an SUV after it ran over his skull, and that big
granite Kormylo Dome of his protected all of his blood vessels. It is an
absolute miracle.
Thank you all for your prayers, love,
donations, and support. I know that his recovery is going as well as it is
because of all of you and your prayers. And my family is staying strong and
getting through this because of you and the blessings that God is sending our
way on your behalf. Keep the prayers coming for Graham -he is a fighter but
still as a long road ahead.
—
with Lindsey Roth Kormylo at Children's Medical Center.
Graham Update Day 5 (6/13/14) pm
Today was another day of rest for Graham. No
MRI's. No radical changes to his therapy. Just some slow, steady progress.
The highlight of the day definitely came
early, as he finally had his c-collar removed. This has been followed by a
pretty significant reduction in his facial swelling - the doctors can open both
of his eyes for the first time in a couple days. When his nurse opened his eyes
to check his pupils this evening, he turned his head away. That's a good
movement that we hadn't seen since arrival; movement that was impossible with
that tight, uncomfortable collar on.
Graham also had his first poop, which made
everyone very happy. Never been so proud of a blowout before!
As the day started his sodium level was a bit
on the high side. It was at 159 and they want it to be at 150. So they lowered
the sodium level in his drip and also tweaked some medication for his pituitary
gland that controls his urine flow. Later in the day it was at 157, so there is
some good movement in the right direction.
When Graham first went to get his MRI
yesterday they started him on Versed (sedative) as well as a paralytic. For
most of the last 24 hours he has moved very little. This is not a bad thing
per-say, but when he doesn't move the doctors can't be certain of his brain
activity. This afternoon they turned down his Versed and this evening he is
back to giving purposeful movements with his arms, legs, and now head as well.
His pupils are still fixed, but we are hopeful that as the swelling goes down
in his brain, it will relieve pressure on the optic nerve and return his pupils
to the responsive state they were in when he first arrived at the hospital.
Graham's brain pressure remains nice and low,
his blood pressure and hemoglobin are good (they've stopped giving him blood
and plasma), and although he does spike a fever from time to time he appears to
have staved off infection thus far.
Speaking of infection, the nursing staff here
in the ICU was just treated to a pizza party for a remarkable milestone - 100
consecutive days without a hospital born infection. This really is the best
place we could be - I have been in awe at the level of care, expertise, and
attention to detail everyone gives to me sweet little Graham.
Several of you have asked about Graham's
"big surgery." So here is what we know:
When we first arrived, the doctors were almost
certain that there would be something in Graham's brain (other than pressure,
which was addressed with a drain to the center of his brain) that would require
time-sensitive surgery. That has not proven to be the case - his eyes are in
tact with good pressure, his neck is healthy, and all the vessels into and
inside his brain are healthy. With that said, he will still require skull
reconstruction, plastic surgery to repair the broken bones in his face, and
neurosurgery to repair the membrane around his brain. All this will be done in
one coordinated effort, with Ear-Nose-Throat and Ophthalmology (eyes) on hand
just in case. At this point the surgery will take place sometime in the next
1-2 weeks - just as soon as Graham is deemed ready and all the surgeons can
align their schedules.
Tonight will be another restful night, and we
are praying for more progress and healing in our sweet little Graham. Thank you
all for your prayers, words of encouragement, donations, and time. I really
feel like the luckiest man alive to be "surrounded" by so many people
all over the world who love and care for my precious son Graham. Keep the
prayers coming!
#PrayersForGraham #PFG
—
with Lindsey Roth Kormylo at Children's Medical Center.
Graham Update Day 6 (6/14/14) am
The last three nights Graham has had two
nurses - Maggie, Maggie's roommate, and Maggie again last night. Maggie said
she was was so happy to hear about Graham's progress during her night off, and
then to come back and "see him look SO much BETTER!" I couldn't agree
more - he's looking better and better every day.
Last night began trying to reign in his sodium
a bit to prevent seizures and kidney troubles. A Normal adult should be between
135-145, if Google serves me correctly. They want Graham at 150 because water
follows sodium, and if there is more sodium in his blood than normal, it will
pull more water than normal from his cells, lowering his swelling. So Graham
was a little high during the day, but it was gradually getting lower; from 159
down to 157. Last night at shift change he was 160, then 161. So they changed
some therapies but it still went all the way to 165. Not horrible, but not good
either. Thankfully at his last blood test his sodium is back down to 161, so it
is trending in the right direction.
He is moving more this morning than he did
yesterday, which is also good. And at the same time his pulse and blood
pressure tell us that he is not in too much pain. So they seem to have his sedation
in a good place.
He did spike a little bit of a fever again
last night, but there do not appear to be any other signs of infection, which
is good.
Graham's lungs also look and sound good. One
of the biggest challenges for the ICU is to take a patient, even one with
healthy lungs like Graham, and prevent pneumonia when the patient moves around
so little. Thus far they are managing it well by turning him every two hours
and giving his chest a vibrating massage several times each day.
Yesterday did have another highlight that I
failed to mention - Graham got his first visit from his two best buds
yesterday: his brothers Brode(7) and Rocco(3 on Monday).
They each brought Graham a balloon, and both
are excited to see Graham again. Rocco handled it like a champ. Brode did too,
but we are still very worried about him. Brode was the first one to find out
about Graham's accident, although he never saw Graham until today. The first
thing he said when he saw us to tell us was "I'm so sorry I'm so sorry there's
been an accident I think it's Graham." At one point in the past few days
Brode mentioned he wished he had been in the accident and not Graham. With all
that said, Brode did receive a priesthood blessing yesterday, then he saw
Graham, and is anxious to see him again. His friend's mom saw him after the
visit yesterday and said he seemed to be doing much better, so we hope seeing
his brother and receiving a blessing have been healing for Brode. We'll keep an
eye on him and continue to shower him with love and prayers, and we hope you
all can do the same.
Thank you again for all that you do for Graham
and for our family. We are so grateful for your thoughts, prayers, time,
donations, and love. Please keep the prayers coming, and God bless you all.
#PrayersForGraham #PFG
—
with Lindsey Roth Kormylo at Children's Medical Center.
Graham Update Day 6 (6/14/14) pm
Two steps forward, one step back. Rinse and
repeat. A lot going on with Graham today as he tries to come off his therapies
and respirator and get as strong as possible for surgery.
Shifts here run 7 to 7, with
"Rounds" (team meetings, and my meetings with doctors) usually
falling between 8 and 9. So as night shift closed this morning, the big battle
was trying to get Graham's sodium in the right place. 150 is where they want it
to be, and at shift change it was 161 after trying to get it in the right place
all night long. One thing that helps is his pituitary drug that controls his
urine, but that runs counter to his goal of getting self-sufficient. So they
are constantly trying to balance his sodium with lower use of the drug. Also,
they don't want to drop it too fast, as a rapid decrease in sodium can lead to
increased brain pressure, which we definitely DON'T WANT!
Graham also has a drain with a tube to the
center of his brain. As fluid drains, they measure it and replace it with an
appropriate amount of saline solution so his brain doesn't dry up. In order to
fight his high sodium level (which brings risk of seizure and kidney problems),
they started replacing the normal saline solution with a solution of only 50%
normal saline, and are now replacing THAT with free-water. His sodium was a
roller coaster all day, but has now settled in nicely at 155.
We have also began more aggressive respiratory
therapy to get Graham's lungs ready to breath on their own. Instead of just a
massaging wand rubbed over his chest, he now gets rapid puffs (3-7 puffs per
second) of air and medicine into his lungs through his respirator tubes. Graham
is doing well with this. He's giving us good coughs and actually trying to
breath on his own - starting some of his breaths ahead of the respirator, and
holding some longer than the machine is forcing him.
We did have a bit of a surprise (not quite a
scare). When Brode and Rocco were visiting Graham today, he started having
short (3-10 seconds) periods of tense movement in his arms and legs. The
"shakes" were not uniform - sometimes just arms, sometimes arms and a
leg, sometimes everything - in time or performance. The medical staff said it
was one of two things, neither one of which is surprising or a setback.
It could be a neuro-storm - basically just a
rush of brain activity in someone with brain trauma who gets agitated after
being sedated for a long time. Very normal, no cause for concern.
It could also be short seizures. This would be
consistent with both his injuries and his high sodium level. They get concerned
when seizures last longer than a minute and/or raise his brain pressure.
Graham's lasted less than 10 seconds and never spiked his brain pressure, so
not a huge deal. They do want things under control and they want to know what's
going on though. So they prescribed him a very safe seizure medication, and
tomorrow or Monday they will give Graham an electroencephalogram (EEG). In this
they will hook nodes up to Graham's head, record his brain activity, and video
tape him. The nurses and I will have a little clicker to mark the start of his
episodes, and they will be able to learn what is causing the "the
shakes."
The swelling in Graham's face has gone down
significantly. Yesterday afternoon they could barely open his eyes by prying
them apart with two long wooden q-tips. Now they can open them with two fingers
like a child does to a sleeping parent. His pupils have been "fixed and
six" for a couple days now - meaning not responsive to light, and six on a
scale of 1-8, eight being the largest. This morning his pupils were slightly
smaller (like a 5.5) and his right eye was ever so responsive to light. So that
is a great sign.
Graham's goals through Monday
(1) Continue to fight off infection and brain
pressure
(2) Find out what's causing the
"shakes"
(3) Reduce sedation until he starts opening
his eyes, with the goal of removing the respirator on Monday
(4) Get his sodium to 150 while normalizing
his therapies
(5) Get strong!
We often hear in life "you can do
anything you want in life if you put your mind to it." This is a lie. No
matter how hard I tried, my 6'4'' body was never going to jockey a horse in the
Kentucky Derby. Just wasn't happening. My sister was never going to play
offensive line in the NFL, and my Dad was never going to be a concert pianist
with those giant banana-hands of his (love you Dad - Happy Father's Day!). We
are all born with a certain number of opportunities on our plates; Graham was
too. Now Graham has a tough road ahead. He may now have the same number of
opportunities as he had before his accident. He may have less. He may have
more! But I do know that when I look my son in the eye in 6 weeks or 6 years, I
will be able to tell him that his Dad did everything he could to give him as
many opportunities as possible. I am on Team-Graham. I don't know what the
future holds, but I do know that God holds it. The road will be long and hard,
but then it is for everybody. At the end of this road is a bright future for my
sweet son Graham because of all your prayers and support, for which I am
eternally grateful. And to that end, please keep praying for my boy, because he
really needs it!
#PrayersForGraham #PFG
—
with Lindsey Roth Kormylo at Children's Medical Center.
Graham Update Day 7 (6/15/14) am
Last night was a very relaxing one for Graham.
His pulse, between 85 and 95, was and continues to be the lowest it has been
since arriving at the hospital. His brain pressure is still in a good place. He
shows no signs of infection. And he is still moving purposefully in response to
physical agitation, all of which are good signs.
Graham's sodium level continues to be a tricky
little bugger to wrangle in and get under control. His last sodium check came
in at 145 - slightly high for a normal healthy human, but lower than the low
150's where we want it for Graham. It also fell a little faster than we would
want, so his face is just a little more puffy this morning than it was last
night. So Graham is now completely off of Vesopressin (pituitary drug to
regulate urine). They are also replacing his brain fluid with saline solution
again instead of free water. So we will continue to monitor that.
Graham, as of this morning, is also completely
off of his main sedative - Versed. His main pain medication, Fentanyl, will
continue to both manage his pain and sedate him to a degree. So while he won't
be in a completely natural state in terms of his responsiveness, we do hope
that he will become gradually more responsive as the Versed wears off. We got
our first glimpse of that just a bit ago - Graham's nurse practitioner tried
calling to him somewhat loudly by name, and Graham responded. To my knowledge,
this is the first time that Graham has responded purposefully to anything
besides physical contact, so that is a wonderful sign.
As of this morning Graham's lungs are looking
better, which is a good response to the more aggressive therapy that he started
yesterday. He was showing just a little bit of collapse in his lungs, but now
they are looking good. The goal in terms of his breathing is to gradually ween
him off of his ventilator, with the goal of removing his ventilator tube sometime
between Monday and Wednesday.
One thing we have continually kept an eye on
is the drainage from Graham's right ear. The first night he was here it drained
110 cc's in about 10 hours. It now drains 4-5 cc's every 12 hours. And while it
is much lower, they would like it to stop completely. As time goes on though,
the consistent drainage seems to be something that will need to be addressed
surgically.
We are hoping for more of the same today for
Graham - no infection, low brain pressure, sodium at 150, more responsiveness,
healthy lungs, and less drainage from his right ear.
Thank you all for your prayers and support. A
very special thanks to Dallas and Katie Dobbs for setting up and managing a
fund for Graham, and also to Heather Empey and Levi Belnap for helping to get
it started. There will come a time soon, no doubt before I am ready, when I
will have to choose between going back to work to support my family and
standing by Graham's side to help him with his recovery. To all of you who have
given and supported that fund, I thank you from the bottom of my heart because
you have bought me more time next to my son Graham. I feel so ungracious that I
have not been able to thank you all individually yet, but I know you by name
and am moved to tears almost hourly by your kindness. I look forward to
reaching out to you individually to express my thanks, but until then I'll use
the keyboard on my iPhone to tell you all: thank you so much - I am eternally
grateful for you.
#PrayersForGraham #PFG
—
with Lindsey Roth Kormylo and 4 others at Children's Medical Center.
Graham Update Day 7 (6/15/14) pm
Sunday was a nice day of rest for Graham. His
lungs are doing well, so we switched his ventilator treatment (think
air-machine-gun into his lungs) from every 4 hours to every 6. We are still
trying to get his sodium level to the right place (142 at noon, 144 at shift
change, trying to get to and stay at 150), but everything else is going pretty
well: he is now off Versed and Vasopressin, his blood and brain pressure are
good, and he shows no signs of infection. So we are definitely grateful for a
nice, quiet, restful day. We'll get this sodium thing figured out soon enough.
They have cancelled Graham's
electroencephalogram (EEG) because they are nearly certain that his
"shakes" are neuro-storms and not seizures. Reasons being: they are
short, they are usually in response to agitating stimulus, and they have no
effect on his brain pressure. The first time they occurred was yesterday when
Graham's brothers visited for the first time. My friend Dallas said "maybe
he was mad because he wanted to play with his brothers and couldn't."
That's the best theory I've heard, so we're going with it!
The only other notable medical fact from today
was positive as well - Graham pooped again.
Graham also got to see his best buds again
today - Brothers Brode and Rocco. Brode held his hand and both of them told
Graham about their days. When the visit was over, Brode said "I know
Graham is going to get better, but I just wish it could happen SOON." I do
too, but Brode, myself, and our whole family have received great peace in
knowing that Graham is with is, he's getting better, and he's in very capable
hands - those of an amazing medical staff here, and those of Heavenly Father because
of all your prayers.
Today was Father's Day, and the greatest gift
I could ever think of at this time is to have thousands of people around the
world praying for my son Graham. It's a miracle that allowed me to spend the
day with him when he could have so easily been taken from me just 7 days ago.
Thank you all for remembering Graham, and please keep praying for him because I
know it's working.
#Prayers4Graham
—
with Lindsey Roth Kormylo at Children's Medical Center
Graham Update Day 8 (6/16/14) am
Last night was a pretty quiet night for
Graham. His lungs continue to do well, he's free of infection, and his brain
pressure is good. He has a new Neurosurgeon and ICU attending physician today
(just part if normal rotations), and it looks like they will be the ones who
oversee Graham into his surgery. It makes sense that his last Neurosurgeon, Dr.
Sklar, didn't want to schedule anything when he knew he was heading off to the
beach for a month. So hopefully we start to see some more definitive timelines
for treatment.
Graham's 3 biggest struggles are now as
follows:
(1) Wake up! A little bit anyway. They have
turned off his Versed but he is still sedated with Fentanyl. They can't turn it
down too much because it also manages his pain, but they do want him to start
opening his eyes and hopefully respond to commands soon.
(2) Find out where the drainage from his right
ear and nose are coming from. They tested the drainage from his ear mid last
week to see if it was spinal fluid, and it came back negative. They have
ordered the fluid from it and his nose to be tested again, and they are talking
about doing another MRI or CT scan to try and see exactly what's going on. One
thing that will get in the way of that is Graham's neurostorming- it's pretty
hard to take a picture of someone who shakes at random intervals. They could
sedate him and give him a paralytic again, but that might undo some of the
progress he's been making. So it will be interesting to see what today brings
on that front.
(3) Sodium Level - still trying to reign that
in. It was 137 this morning. Great for you and me, not optimal for a
head-trauma patient.
Eric Goldthorpe and Stephanie Lincoln have all
been very active on Twitter for Graham. Dallas Dobbs and Katie Dobbs have been
too: tweeting, creating and managing his Facebook page, and creating and
managing his Fundly page. I'm very grateful for all of you, and for the
countless people who have supported and donated to their efforts for Graham.
There is a cool thing that happened this last weekend that as a result of their
combined efforts I will share now:
Friday night I got a direct message on Twitter
from Ben Rogers of the Ben and Skin Show on 105.3 here in Dallas - the Flagship
Station for the Dallas Cowboys. Ben's radio show is on weekday afternoons from
3-7. Ben asked me to send him my cell phone number, and at 11:30 on a Friday
night we started texting back and forth about Graham. He said some very
touching things, and asked me to pass along his contact info to Dallas so
"he can contact us to help him help (Graham) while (I) focus (my) energy
where it needs to be."
Dallas and Katie spoke to Ben on Saturday
morning on their way to Rocco's first soccer game. They will be doing a
pre-recorded interview today for The Ben and Skin show, with plans to air it
today or sometime this week to garner even more support from Graham. Ben Rogers
has taken to Twitter for Graham as well, and as a result yesterday the
congregations of the Prestonwood Baptist Church in Plano, TX and the Dauphin
Way Baptist Church in Mobile, Alabama were all praying for Graham. I'm so
grateful for everyone's efforts - there are too many people to name - to help
Graham get better. Thank you all.
The person to whom I'm most grateful on this
earth is without question my beautiful wife, Lindsey Kormylo. She has the
hardest job - managing what seems like a dozen schedules, running kids and
people all over the place, spending time with Graham, putting together a
birthday party for Rocco, taking care of Brode's tender heart, and nurturing
our two-month old baby girl Isla. In short - making sure that life is as normal
as possible for our other three kids, all while she endures a crisis. All these
things while Dad stays next to Graham all day and night. My job is easy.
Lindsey's is not. I'm amazed how how much she is able to do (with a lot of help
from friends and family of course) while being such a rock for our kids and me.
Crisis brings out the best in people, and Lindsey's best is better than I ever
could have imagined - it is absolutely amazing.
Thank you all for your prayers, donations, and
support. And please keep praying for Graham.
—
with Lindsey Roth Kormylo and 4 others.
Today has been good day. In spite of the fact that we can't get Graham's sodium up were we want it, his brain pressure is right where we want it to be. He shows no signs of infection, and is moving more and more purposefully with each hour. He is "breathing over" his ventilator on nearly every breath, and the amount of each breath that is done by his work and not that of the machine is increasing as well.
The drainage from his right ear and nose
persist, so more and more it's looking like those will just have to be repaired
surgically during his "big" surgery coming up. We are hopeful to have
a date for that soon, maybe tomorrow morning during rounds.
Graham continues to neurostorm (shake and flex
his arms and legs) when agitated, and we think we have isolated the biggest
source of agitation - crying babies. Before his accident, Graham was very
troubled by crying babies. It didn't bug him, but troubled him. He felt bad
that anyone would cry and that sound made him want to help or get help. So
today when his nurse and I were comforting him during an episode of "the
shakes" we both realized that his neurostorms came on and off like a light
switch with the crying of the babies in each of his neighboring rooms. Crying
on - shake it. Crying off - chill.
We also had a nice birthday party for Rocco (3) downstairs in the train room. This hospital is an amazing place for children. I'm so excited for Graham to get better here. They have libraries, art rooms, a faux radio studio courtesy of Ryan Seacrest, and of course The Train Room. Think of the trains that go around your Christmas tree. On steroids. Dozens of them. In an open two-story room. Loaded with superheroes, cartoon characters, and Star Wars figures. All circling Dallas, Mount Rushmore, and other locales. Needless to say it was the perfect place for pizza, family (including all the grandparents), and cupcakes. I don't think we could have rented a place that would have made Rocco more happy. Now I can't wait for Graham to experience it as he gets better with Lindsey and me at his side.
Speaking of Lindsey, if there was ONE WORD I could use to describe my wife as a PERSON, it would be "selfless." She is always concerned about others, always putting herself last. What woman never shops for herself? Lindsey. I joke with her and friends that if she was at someone's house and her arm somehow got cut off, the first words out of her mouth would be "I'm so sorry for bleeding on your floor. Let me clean this up."
If there was ONE WORD I could use to describe
Lindsey as a MOM, it would be "protector." Above all else, Lindsey
will FIGHT to protect her children. If you purposefully put her kids in danger,
make them afraid, or threaten their well-being or their happiness in any way,
then may god have mercy on your soul, because my wife will show you NONE. At
the beginning of the school year Graham was really nervous about getting to
kindergarten and wanted to be walked in to his class. That happened on the
first three days, but on day four the front office wouldn't let Lindsey walk
Graham in. That made Graham nervous and very afraid. Lindsey with a scared
Graham vs. the office staff? I'll let you guess who won....
So now to my point in sharing those things
about my awesome wife:
When Brode found out about Graham's accident,
he ran straight home and rang the doorbell frantically. My wife answered, and
they both started running towards the scene of the accident, hand in hand,
while calling for me to follow. When I stepped outside I saw all the emergency
vehicles, and took off on a dead sprint about fifty yards behind my wife. Now
remember who my wife is - every instinct, tendency, and emotion she had told
her to run to her injured son, grab him in her arms, and fight to protect him.
It's in her wiring. It's in her bones. It's woven into her DNA. And yet when
she got close to the scene but still out of sight, with Brode holding her hand
and me trailing fifty yards behind, she stopped.
Lindsey resisted everything that her entire
existence and all her instincts were telling her to do, and she stopped. She
waved me past and took Brode to the another neighbor's house. If she had not
followed that prompting, that hunch, that inspiration, that flash of brilliance
- whatever you want to call it - then Brode would have arrived to see Graham
being hoisted from the driveway, pool of blood next to his mouth. Brode would
have seen Graham's tiny body getting carried into the ambulance. And then Brode
would have seen the door shut. I saw it. It absolutely ground up my heart to a
pulp, and nearly took me off my feet. It's an image that terrifies me. I wish I
could forget it. But I'm so grateful that both Heather and my wife kept Brode
from seeing that terrible accident, saving him from that pain. Yet another
miracle in Graham's recovery, although it was one we initially missed and did
not recognize until days later. How many more miracles in life do we all miss
every day, when not driven to our knees by crisis?
Thank you all for sending so many miracles
Graham's way with your love and prayers. I'm certain that there are more that I
am too stupid and proud to see. We are so grateful to you and to God for
lifting our entire family up during a tough time. I'll look forward to posting
more updates on Graham tomorrow morning and evening after rounds, and I will be
praying that those updates are full of more good news. Please do likewise, and
thanks again for all you do.
#Prayers4Graham
—
with Lindsey Roth Kormylo at Children's Medical Center.
Graham Update Day 9 (6/17/14) am
(This is an old picture of Graham but captures
the essence of who he is - pure, sweet, unbridled joy)
I
spoke with Graham's Neurosurgeon Dr. Braga this morning like I do every day. He
said at this point the only reason that Graham would actually need Neurosurgery
that he sees now would be to repair the membrane (dura) that surrounds his
brain. This is amazing! Last week they sent the drainage from his ear to the
Mayo Clinic to see if it was cerebrospinal fluid (CSF), which you would expect
to see in someone with a torn dura. The test came back negative. They resent
the drainage from both his ear and nose at the end of last week to test it
again because they really thought his leaks are CSF. As it turns out we got his
results this morning during rounds - the drainage from his ear is NOT CSF. The drainage
from his nose IS. If it persists through tomorrow, they will put a drain into
his lumbar region to hopefully take the pressure off the part of the dura that
surrounds his head. Then if it heals, no neurosurgery. If it persists - surgery
either Friday or Monday.
Graham is breathing almost entirely on his own
as they ween him off his ventilator. He is beginning and ending all his breaths
on his own, and the only function the ventilator is currently performing is to
provide a little bit of pressure inside his lungs as Graham breathes to make
his breaths easier. They would like to remove his ventilator entirely tomorrow,
but there are two things standing in the way. First, the crania-facial team
needs to be sure that his mid-face is stable enough to handle reinsertion of
the tube when he eventually gets surgery. Second, they want to wait to remove
it until AFTER they do a lumbar drain, if they need to go that route. So we'll
see.
Other notable progress - Graham is able to
take in large amounts of air and cough on his own. He also yawns occasionally,
which is the cutest thing you can imagine! He pooped on his own without an
enema. And now the big one - this morning when he was being examined his nurse
practitioner asked him to hold up two fingers. He didn't, but he CLEARLY held
up one. Then she asked him to squeeze her hand and he closed it around her
fingers and wiggled his thumb.
We are very excited for Graham's progress and
continue to pray for his recovery. Thank you all for your prayers and support,
we could not do it without you.
—
with Lindsey Roth Kormylo at Children's Medical Center.
Graham Update Day 9 (6/17/14) pm
Today it was awesome to see Graham move more
purposefully. When you watch him yawn it is easy to forget that he is in the
fight of his life - he just looks like our little Graham Hopper. They
completely turned off his ventilator so that he was initiating and finishing
every breath - the machine was just keeping positive pressure in his lungs to
make his job a little easier. He had a good coughing session as well. That's
something we like to see because you draw in more breath to produce a couch
than just a normal breath, and it's a good lung workout for a little guy like
Graham. So he coughed a bit, but then he stopped breathing. I panicked a bit at
first and went out of his room for help. They were in the middle of
transporting the girl next door to another floor, so it was hard to find
anyone. The panic set in a bit stronger, and by the time I finally found
someone to help I was totally freaking out - and Graham was breathing again.
The nurses had told me previously that that could occur, and if he did stop
breathing the machine would recognize it and get him breathing again. So he
held his breath about the same amount of time as he would in the swimming pool,
I panicked, and then it was business as usual. If there was any doubt that I am
a total novice in the hospital, that removed it. I'm extremely grateful for the
caring staff, modern medicine, and technology to take care of Graham in a way I
never could.
They removed Graham's central line a bit
later, which is basically a tube that gets inserted near his groin into his
femoral artery. This was used to attach up to three lines to give him drugs,
fluids, etc. It was also used to measure his arterial pressure, which has been
consistently healthy. This is not a long term line though (he's had it changed
once already) and the placement of it being near the bowls poses a slight risk
of infection. So they did a PICC line into his arm. This has two lines for
drugs and fluids, doesn't measure arterial pressure, can be left in for longer
periods of time, and doesn't pose the infection risk that his central line did.
Later in the day Graham had his daily dental
treatment, where we are closely monitoring a loose tooth. It's only his second
one ever, so we need to be sure to save that one for the tooth fairy. Graham
lost his first tooth about 6 months ago, and the stubborn little baby tooth
next door has defied the odds until now, where it dangles by a thread. Graham
has asked just about every day for some time now if it's ready, and it hasn't
been - until now. So we definitely need to confiscate it when it meets its
ultimate demise for Graham to cash in at a later date.
While brushing Graham's teeth (think
combination toothbrush + sponge + that sucking thing at the dentist) we
received another positive sign of progress - he closed his lips around it when
it was in sucking mode. Several times. This remanifestion of previously learned
behavior is a great sign that his facial nerves are in tact, and yet another
purposeful movement that he didn't do the day before.
Tonight is a really big night for Graham. The
cerebrospinal fluid draining from his nose seems to have stopped, although they
will verify that in the morning. In hopeful anticipation of clearing that
hurdle, they are prepping Graham to remove his ventilator. Currently he is
taking Valium for his neurostorms and fentanyl for pain. I always assumed that
versed was the most powerful thing he is taking but Google tells me I am WAY
off. Fentanyl is a fast acting drug that is most often administered through a
patch (not a drip like Graham), and is 50-100 times stronger than morphine by
dose. So as they seek to de-sedate Graham a bit more, they are now giving him
methadone (most well-known for treating heroine addicts) both for his pain and
to wean him off of the fentanyl. They are cut his dose of the latter in half 20
minutes ago as I write this, and they will cut him off completely at 4 am CDT.
They want him to be relatively awake and responsive to commands for about ten
minutes before they are comfortable removing his breathing tube. His nurse
tonight said this was the hardest part of recovery for parents to see, and is
actually still hard for her. He will be very uncomfortable and will NOT like
the breathing tube and feeding tube that he feels down his throat. I don't
blame him - I wouldn't either. So needless to say we are praying for a
smoother-than-expected morning for Graham, and continued progress from this
amazing little fighter. Thank you all for your prayers and support - I'm
certain we'd be a wreck without them.
#Prayers4Graham
—
with Lindsey Roth Kormylo at Children's Medical Center.
Graham Update Day 10 (6/18/14) am
Graham
had a great night, and a rollercoaster morning.
We’ve known that he would have some scary moments, and we’ve definitely
had a few today.
Last
night was just fine. His sodium climbed
steadily to a range and at a pace that the doctors are happy with. He was responsive, breathing well, and
tolerated the removal of his fentanyl drip without a hitch. His swelling in his entire body continued to
go down. The neurosurgeons were happy with his responsiveness, and the drainage
from his ear and nose had completely stopped.
All was well through 8:00. The
plan to remove his ventilator was moving forward as planned.
Then they
gave him another dose of methadone. It
basically hit him like a ton of bricks and made him very sleepy. He was no longer responsive to anything but
the most agitating stimuli. He had
basically been breathing on his own for about 18 hours, but after 8:00 his
ventilator was having to go into backup mode repeatedly. Even knowing that Graham has a safety net,
seeing the line on his monitor that gauges his breathing go flat is very hard
to watch.
They
skipped his last valium dose, and moving forward will only give him a half a
dose of methadone. He is now starting to
wake up a bit more, but he is definitely not as responsive and alert as he was
this time yesterday. Also, around the
time he got “sleepy” his sodium jumped from 152 to 162, which is not optimal to
say the least. So he is going back on
his vasopressin for his pituitary gland to help regulate his urine a bit, and
we will still work to get his sodium where the doctors want it to be.
So for
now the plan is to get him to wake up some more, monitor his response to his
pain meds, and take out the ventilator.
The two biggest concerns with this are (1) getting it back in when needed
given the fragility of his face, and (2) What to do if he stops breathing again
with the tube out. Normally when moving
from the ventilator to breathing on one’s own there would be a transition phase
in between with a tight-fitting mask that has the ability to inflate his
lungs. Given all the breaks in Graham’s
mid-face, that mask is not an option. Their
options of helping him breath once they get the vent tube out are limited to
things that require them being “very careful.”
So we are anxious to see how he bounces back from this setback, and how
the doctors plan to handle things moving forward.
It has
been a rough morning in terms of anxiety, but there hasn’t been a major setback
in terms of his healing, and we are very grateful for that. He continues to look better and better every
day. If I could stick his glasses on him
I have a feeling that this morning he would look a lot like himself. We still feel the peace that comes from God
as a result of so many praying for him, and are confident that he will continue
to get better and better every day.
Graham Update Day 10 (6/18/14) pm
Imagine you are on a beach with the
waves pounding against the sand. Or
maybe in one of those wave pools at the water park. Now imagine you have 12 huge beach balls, and
you are tasked keeping them all in the water and moving them about 100 yards to
goal on the other side. You might get
two or three across, but by the time you go back for numbers four and five, those
which you have already carried to the goal are back floating wherever the tide
takes them. Such is today for Graham.
On the one hand, the sodium and sedation
“beach balls” have proven to be big challenges for our little guy. No sooner does Graham climb up a hill to get
his sodium right where the doctors want it, than he finds himself at the bottom
on the other side. Case in point: Yesterday Graham’s sodium started at 134,
with doctors trying to get it in the 145-150 range. Overnight and into the morning he moved
rapidly in the 160’s where he has been for pretty much the entire day, and where
he was over the weekend. Unfortunately,
there is no 30-minute meal recipe for getting him in the right place; it’s just
read-and-react, and try to figure out Graham’s body. But then again, did we really think we could
so easily figure out the boy with a shoe on one foot and a flip flop on the
other? Nah, and that’s OK. We’ll figure it out. It’s just gonna take us a bit to get in step
with HIS drumbeat.
Regarding sedation: Methadone basically just knocks Graham out.
It’s made him very sleepy and minimally responsive. For the better part of the day he’s had lots
of trouble breathing. He’ll cough –
which is good – but then stop breathing for a few seconds immediately
thereafter until the machine fires him back up.
It’s hard to watch that green line which charts his every breath move
rhythmically up and down on a monitor for 10 days, only to see it flat-line
repeatedly beginning this morning.
There’s a part of me that thinks Graham is just holding his breath and doing
the only thing he can to get our attention and saying “Mom! Dad!
I’m here!” But mostly it just
makes me very nervous.
So while those “beach balls” drift off with
the tide and do their own thing, we have managed to get a couple others to a
really good place.
The first breakthrough came this morning
when the medical staff decided to try pricking his finger to draw blood instead
of drawing it from an IV. The thought
process was that since they are using the same line to give him saline drips as
they do to take samples for labs, then maybe when they draw blood they are
pulling from a tainted source. So the
nurse prepped his finger with alcohol, got a vial ready, and said “Ok Graham,
you’re just going to feel a little poke.”
The second she SAID that, he pulled his soon-to-be-poked hand out of
hers and across his body, and then pushed it back outside the other side of her
hand as she tried to grab it. The nurse
was very excited to see him respond in a deliberate way to a previously learned threat to his comfort, and for him to do
so on verbal queue alone. Lindsey and I
are excited too!
Later in the day the attending physician
checked his pupils with a flashlight.
His right pupil flickered just a bit under the light, and his left eye
even more. It was the first time that
BOTH of his pupils had clearly responded to light during the same exam. Four hours later Graham’s nurse checked him
again. She looked at the right pupil. Then went to the left and said “Oh yeah this
one is definitely moving.” She checked
the right yet again and saw it shrink just a bit. So both have eyes dilated during the same exam
twice today – a much bigger breakthrough in my opinion than taking out his
breathing tube would have been. Sodium
and sedation levels have been tough, but we will corral them eventually. He’s had a few setbacks to his PROGRESS, but
no setbacks to his HEALTH – his brain pressure is still good, he’s infection
free, and everything south of the jaw is still in tip-top shape. So for all that we are very grateful. We’ll continue to pray that his sodium finds
equilibrium, that the doctors find a sedation method that gets him to a good
consistent level, and that he can get his breathing tube out sometime in the
very near future.
The gameplan tonight is (1) Manage that
sodium (2) Give him only half doses of methadone to keep him comfy and hope
they don’t put him in hibernation mode again (3) Hope that he breathes
consistently on his own to prepare to get his breathing tube out tomorrow.
Thank you as always for your prayers,
donations, and support, and please keep those prayers for Graham coming!
#Prayers4Graham
Graham Update Day 11 (6/19/14) am
Last night was pretty good for
Graham. His sodium has been dropping
slowly but steadily in the right direction, and now sits at 156 (was at 166,
target is 150). His brain pressure and
other vitals are strong. Last night he
only went into backup-mode once for his breathing. He continues to make great strides with his
responsiveness as well. Last night his
nurse told him she was going to brush his teeth, and Graham pushed her hand
away. This morning when they tested his
pupils with a flashlight he squinted as they shone it into his eyes – a great
reflex that we had not seen before.
We’ve seen his pupils move, but he has not squinted his eyelids in
response to light until now. One of the
best signs that we’ve seen so far happened this morning at about 8:00. His nurse practitioner held his left hand
(Graham is a south-paw) and asked for a thumbs up. He did it!
Then she asked him to move his feet, and he wiggled BOTH sets of toes! This is easily the most responsive he has
been to vocal commands since arriving at the hospital last Monday, and is an
answer to very our very specific prayers.
Thank you all for continually praying for Graham – we know it’s working.
I am continually amazed by just how
caring, careful, detailed, and expert this hospital is. There are 12 different specialists who see
him everyday – Nurse, Charge Nurse, Nurse Practitioner, Respiratory Therapist,
Attending physician, Trauma Physician, Physician’s Assistant, Upper Extremity
Physical Therapist, Lower Extremity Physical Therapist, Brain Surgeon,
Infectious Disease Doctor, Skin Therapist.
And these are just the everyday people.
Countless others see him for very specific things all throughout the
week. And yet with all these people, and
with all the other patients and visitors, today marks 150 consecutive days
without a hospital-born infection here in the ICU. They had a bloodstream infection in one of
their patients 151 days ago, and before that they went 194 days without an
infection. Absolutely unbelievable. We don’t even go 150 days without an
infection in MY HOUSE.
Graham’s next big steps are as follows:
(1)
Remove his
breathing tube. The half-dose of
methadone continues to make him sleepy, but not so much that he stops
breathing. So they are going to watch
him for the next few hours and if all continues as planned they will remove his
breathing tube this afternoon or tomorrow morning.
(2)
Clamp the drain
from the center of his brain. Not having
any leaks in his ears or nose, and continuing to show great ICP (internal
cranial pressure or brain pressure), the neurosurgery team is planning on
clamping his brain drain this Saturday or or Sunday. They will then leave the tube in for another
72 hours or so, monitor his ears, nose, and area around the drain to make sure
it doesn’t start leaking again. They
will also monitor his ICP….
(3)
… and if all that
goes well, then sometime next week Graham will have his drain removed, and
won’t necessarily need to have it put back in, even after his skull and facial
reconstruction.
I was thinking this morning about how
steady Graham’s progress has been. He
has exceeded both my expectations and the expectations of his doctors time and
time again. People can call him lucky,
but I call him a fighter, and I call him blessed. So I wanted to take just a minute and count
all of the amazing blessings that I can remember seeing since the time of his
accident:
1)
Graham is alive,
when such an accident would have killed me.
2)
He pulled himself
out from under the car after it ran over his head.
3)
His glasses did
not shatter on his face and cut his eyeballs. His eyeballs are completely
intact.
4)
His skull broke
in mostly one large piece, instead of getting crushed like an eggshell.
5)
No skull
fragments entered his brain.
6)
No damage was
done to the vessels in his brain.
7)
His neck and
spinal cord are healthy.
8)
Everything below
his jaw is healthy.
9)
He can hear
10)
The woman
involved in the accident prevented Brode from seeing Graham immediately after
the accident.
11)
Lindsey prevented
Brode from seeing Graham immediately after the accident.
12)
The contusions on
his brain that we saw in his scans on the first night did not get worse over
time.
13)
Most patients see
huge elevations in their brain pressure or internal cranial pressure
(ICP). They start treating when ICP
sustains over 20. Most patients,
especially from 24-72 hours, see huge spikes in their ICP often climbing to 60
or 70. Only once did Graham’s ICP ever get
above 20, and it lasted for less than 20 seconds.
14)
He has moved all
his arms and legs.
15)
He has moved all
his arms and legs in a deliberate response to vocal command or threat (like
poking finger or brushing teeth).
16)
His eyes are
responsive to light.
17)
He can squint
both eyes.
18)
He can move his
head.
19)
He can close his
mouth around dental vacuums.
20)
He is free of
infection.
21)
Thousands of
people around the world are praying for and supporting Graham.
22)
The spinal fluid
leak from his nose stopped on its own.
I’m knocking on wood as I type this, but as of now Graham will not need
brain surgery. A lot can change, but I
repeat – right now, after getting his head run over by the front tire of an
SUV, the doctors see nothing today in
his brain that will need to be repaired surgically.
When you consider that Graham’s accident
most likely would have killed anyone reading this update, and you see instead
the progress Graham has made, there is no doubt in my mind that prayer is real,
it is powerful, and it is having a powerful effect on Graham. Heavenly Father has protected Graham and my
family from the moment the accident occurred.
Heavenly Father loves all his children, and while bad things happen to
good people, they do so to help all of us become more like Him. To rally around one another. To see the good in people and in the
world. God loves us all and answers the
prayers of those who show the faith it takes to pray. And there is no doubt in my mind that God is pouring
blessing after blessing upon Graham because so many have shown the faith to
pray on his behalf. I hope that you feel
God’s love for you as you see him heal my son.
I do. And I hope you continue to
pray for Graham and many other worthy causes in this world, because God does
answer prayers.
#Prayers4Graham
Graham Update Day 11 (6/19/14) pm
Today has been a big day for Graham in a
lot of ways. It started off with really
good progress in terms of Graham responding to commands – giving thumbs up;
wiggling his toes on command. Graham
also did a great job of breathing. From
the morning on I don’t ever recall him going into “backup mode” on the ventilator. In short, Graham showed everything the
doctors wanted to see to feel comfortable taking the breathing tube out, which
is a step he needs to take to advance his physical therapy.
Only things are not that cut and dry for
Graham.
In the first place, there is normally a
step between ventilator and free breathing that Graham just cannot take. Patients will normally wear a tight mask to
help breath after the ventilator and baby-step their way to free breathing, but
due to the many fractures in Graham’s mid-face, those baby steps are not an
option. It’s just one giant leap for
Graham-kind.
Today we also got word from plastic
surgery that inserting a feeding tube through Graham’s nose is NOT an
option. This complicates things a
lot. Graham’s feeding tube runs into his
small intestine through his mouth, which is fine when you are sedated and
already have this ventilator monstrosity in there. But once you wake up more and you have this
tube stuck down your throat, it becomes more of an issue. It gags you.
You want to force it out with your hands or tongue or any way you
can. So they need to look at alternative
options for feeding Graham, because it will likely be a long time before he
eats normally again. They looked into doing
a surgical procedure with the gastro-intestinal team that could be done in-room
this afternoon to insert a feeding tube directly into his stomach, but they
can’t open his mouth wide enough to do it.
So the only option left is to get him into the OR to insert a feeding
tube into his stomach, but that surgery requires intubation of his
ventilator. So the timing of that
surgery weighs heavily on the minds of the ICU team – is it worth it to take
the tube out for only a day? No. Three days?
Probably not. Five days? You get the idea.
We also know that Graham will have to be
reintubated when he goes in for his “major” surgery, which still as of now will
not require neuro surgery (Thank Heaven).
It will require significant skull and facial reconstruction, however. So the timing of that relative to now and to
his other surgery is also a factor. We
still don’t have a date for that. They
say today that they will do it in 1 to 2 weeks.
It seems like that have been saying that for … 1 to 2 weeks.
So the morning and early afternoon
involved lots of doctors and nurses and phone calls between doctors and
nurses. Finally things were pretty well
set: “Major” surgery not for 10-14
days. Feeding tube surgery next
Thursday. Graham doing well – extubation
today!
So at three a clock they prepped the
room. 4-5 different people came in and
surrounded his bed. They turned the
rarely-used BRIGHT lights on and went to work.
They started out by positioning his jaw and neck in an advantageous
way. Then they deflated the little
balloon in his throat that holds and seals the tube in place. And finally they pulled the tube out. All pretty seamless. But what happened for the next ten minutes
was pretty tough to watch.
For those of you who have had children,
you know that newborns don’t typically just charge out of the womb crying and
breathing. They are not breathing when
they come out. There is
stimulation. Suctioning. Some fluid comes up. A little coughing. Then breath.
That is exactly what taking the tube out
was like for Graham at first. There were
several seconds where he just didn’t breath.
The doctors sucked up some fluid or mucus. Then he coughed. Then he wheezed. Then coughed some more. Finally he started to
breath somewhat consistently, but it was very arythmic. Long breaths and short. Lots of coughing and wheezing. Every stethoscope in the room being used by a
medical professional with a concerned look on her face to listen to his throat
and lungs. Repositioning the head, the
neck, the torso.
Then finally he was breathing OK on his
own. Only as time went on he seemed to
labor to get his breaths in and out.
Then he labored some more. The
doctors explained that there are a lot of things you and I do every day in
terms of positioning our jaws, necks, and shoulders that help us to
breath. Those things might just be too
hard for him at this point. Lots of
different people checked him as Lindsey and I watched with our hearts in our
throats. Finally after about 90 minutes,
one of the nurse practitioners came to us and said “I’m a glass-half-full kind
of girl, but I’m telling you he is probably going to need to be
reintubated.” In other words, it’s time
to put the ventilator back on.
We knew that was a possibility. The staff had been very clear that there was
no way of knowing how he would respond to getting off the ventilator until they
tried. And they had taken every
precaution to make sure it would be safe, given all the breaks in his mid-face,
to reintubate if needed. But it’s really
hard to see your son go through all that, and then gag on his feeding tube,
reach to pull it out, and then get frustrated by his restraints. It’s hard to watch that as a parent. Not because it’s lowering the ceiling of his
recovery. Not even because it sets
things back a few days – it’s a long recovery that will take months – so what’s
a day or two? No, it’s hard because he
is our sweet son, and that was really hard on him, and it seems like he went
through it for naught.
So just before shift change they started
getting all the drugs in order to anesthetize and sedate him for the procedure,
but when they checked the O2 and CO2 in his blood they were both staying at
really strong levels. Leave it to
Graham, the fighter, to work so dang hard and give little miss glass-half-full
and the whole team reason to leave keep that tube out of his throat. The attending physician looked at him very
closely and said that the only thing really obstructing his breathing and
causing him to labor so much is the damage behind his nose and to his mid-face. In other words, Graham is ready, but his
injury just isn’t and won’t be until after surgery.
Take the tube out. No, put the tube back in. No wait – ventilator limbo. That’s the name of the game today. At 8:45 he wasn’t so labored in his
breathing. But by 9:10 he sounded like
he was really struggling again. Miss
glass-half-full came in to suction his airway just a bit to clear mucus, and as
she did so the physician’s assistant came to tell me “I’m going to go ahead and
reintubate him. His CO2 is climbing
steadily, clinically he is struggling much more, and we don’t want it to get to
a crisis stage.” Glass-half-full came to
console me and tell me it’s not a bad thing.
And I totally agree! It may be a
step back in terms of time, but what’s a few days in a recovery that might be a
year or more? It’s not a step back in
health, and that is what is most important.
Graham and our whole family have been blessed beyond belief by God and
everyone’s prayers and support. This
bump in the road? It’s really tough to
watch and go through, but it’s certainly better than crazy high ICP (brain
pressure), strokes, bleeding, or uncontrollable seizers. It’s not a setback in his health. It’s just really hard, but Graham can do hard
things. He’s proven it again and again.
So while we prepared to reintubate at
9:15, the attending physician came just to check and sign off on Graham: who is
breathing normally, and whose CO2 is actually going back down, not trending
up.
So for the last six hours we have played
ventilator yoyo. We are now waiting on a
chest x-ray to give the doctors more information about Graham’s lungs, and we
will see what the night brings.
#Prayers4Graham
Graham Update Day 12 (6/20/14) am
After a roller-coast that lasted about
12 hours, things are pretty quiet now in Graham’s room. His chest X-ray showed very healthy lungs, so
they watched the CO2 and O2 in Graham’s blood, as well as his apparent exertion
levels, to determine whether or not to keep Graham off the ventilator or put
him back on. Graham intermittently had
some gurgling and wheezing sounds as he breathed, but that was corrected by
suctioning a bit of fluid from the back of his throat. His O2 saturation has stayed consistently
high, and while is CO2 is climbing a bit, it has not reach a level where they
say “we need to intubate him.” So he
made it through the night breathing on his own, snoring loudly in true Kormylo
fashion.
From the time Graham got off the tube
until I fell asleep last night he was coughing, which is good. His coughs, however, were not as powerful as
they were when he was on the vent machine – every cough had a last-breath sound
to it, as though he was completely emptying his lungs to try to clear his
airway. Nonetheless, it was absolutely
heart-warming to hear his own vocal chords fire underneath his coughs, as
opposed to the Darth Vador-esque sound that we would hear when he coughed into
his ventilator. This morning his cough
is much stronger and he sounds like Graham, just giving a normal cough.
He’s still not out of the woods as far
as his ventilator is concerned. They are
watching him very closely and are ready to put it back in at a moment’s notice,
depending now mostly on his O2 and CO2 levels since he is not as labored while
breathing.
Graham is definitely more sleepy now
than he was yesterday. He is not moving
around as much and is not responsive to commands. At first glance this is concerning, but I
spoke to his doctor for about 20 minutes this morning and he said that this is
very normal. He said a lot of the drugs
Graham has been on take a long time to wear off, causing a persistent
sleepiness that overcome at random intervals.
The fact that he was so responsive yesterday is likely due to a
combination of the fact that they skipped his morning methadone and delayed his
morning valium. That would allow Graham
to feel a bit more pain, and “there is nothing like pain to overcome the
effects of sedation and medication.”
Combine that with getting his tube pulled, and it makes sense that from
8:00 yesterday morning until 5:00 pm Graham was moving more and responding more
than he ever has. Has he since settled
into his breathing patterns, however, and as they put him back on a normal pain
regime, he is simply “getting rest.” His
doctor also said that things will be very inconsistent for a long time. He said it is very normal to see something
once, like a thumbs-up on command, and then not see it again for days or
weeks. But the fact that you see it lets
you know the wires are still there and intact, and with time things will
normalize and get consistent. So that
long list of blessings I posted the other day?
Even bigger than I had imagined because there are a lot of “firsts” on
that list.
One thing that has been weighing heavily
on the minds of both Lindsey and myself is possibility of putting Graham on a
breathing tube so many times. Consider
this scenario:
1 Yesterday – Tube out 1st
time
2 Tube back in.
3 Tube back out to try again.
4 Tube back in for surgery to insert
stomach tube
5 Tube back out.
6 Tube back in for skull and facial
surgery
7 Tube back out.
8 Tube back in because he’s still not
ready.
9 Tracheostomy to provide short-term,
unobstructed airway that is easy to manage for both the patient and the medical
team.
That is a lot for anyway to endure, let
alone someone who is recovering from an accident as traumatic as Graham’s. Lindsey and I both questioned to ourselves yesterday
afternoon: why do ALL THAT ^ ? We
wondered to ourselves – if #9 seems likely, why not just skip all the pain and
heartache of numbers 3-8? We didn’t
really say all that much about it to Graham’s team. Then we got a call that we are very grateful
for.
Our friend is surgeon who does facial
reconstruction in children. He does everything
from cleft palates to injuries like Graham’s.
He called just to tell us about his experience with facial
reconstruction, and explain a lot of the benefits to the surgeon and the
patient of going with a tracheostomy. It
totally answered the questions that Lindsey and I were posing to ourselves, and
made us very comfortable with all the options on the table. Today in speaking with his doctors I sort of
pressed the doctors to think about going straight from 2-9, saying it might
just make more sense. His doctor
actually had a relieved look on her face and said “You are the complete
opposite of the normal parent we see in here.
We often raise that option and the parents say ‘no way! You are not
doing that to my child.’ I’m glad you
are so open to things that will help Graham, and while as doctors we try to
give the patient every opportunity to thrive without the tube or a
tracheostomy, we will definitely keep you involved as we manage your son.”
I know the hospital is very concerned
about Lindsey and I as parents and about our whole family. And while I trust COMPLETELY their judgment
and commitment to Graham’s health, I know it is only human to try to spare the
feelings of the parents as you raise options for medical care. A surgeon a couple thousand miles away felt
impressed to call a couple worried parents.
It helped both us so much “in the moment” last night, it has helped me
in my discussions with his doctors this morning, and I have a feeling that it
will prove to help in more ways than one in the long run as well. My wife and I
are so grateful for our friend – you know who you are.
So we still wait. We wait for Graham’s sodium to stop riding a
pendulum. We wait to see what will
happen as far as his breathing is concerned.
And we wait for Graham. We know
he is in the best of earthly and heavenly hands, and we know he’s a
fighter. So we’ll watch as Graham rests
today and patiently count our blessings.
And we will keep praying for Graham.
#Prayers4Graham
Graham Update Day 12 (6/20/14) pm
A lot of people have been asking me –
“Why do they keep putting off Graham’s surgery?” I’ll try to answer that as best as I can,
then recap what turned out to be a very interesting day for Graham.
When we first got to the hospital Monday
night, the team initially said they would “almost definitely” perform
neurosurgery 1-2 days later. Their
rational for doing so at the time was totally spot-on: 6 year-old gets his head run-over and crushed
by the front wheel of an SUV, and it is almost impossible that there wouldn’t
be significant vascular damage to the brain, bleedings, strokes, swelling, and
bone shards throughout his brain. Those
are all things that would require very quick brain surgery, and things Graham
was spared from suffering.
So then at that point his new timeline
became 1-2 weeks, meaning we would be operating right about….today. The purpose of that timeline back then for
surgery was to repair the membrane surrounding his brain – the dura. That is something that is not as urgent as
bleeding in the brain, bloods clots, or bone shards. But when that membrane is torn and open like
Graham’s was during the accident, the brain is exposed to air through the nose
and ears. We could see the air in
Graham’s brain on his CT scans, and air flowing through the nose and ears into
the brain poses a great risk for infection – the LAST thing you want in your
child’s brain. His doctor at one point
said “We want to give it another day or two to heal on its own, but the way his
skull is broken that is not likely to happen.”
Also seemed unlikely because of the consistent, persistent leakage. But then very suddenly, it stopped. No need for brain surgery.
When we think of cosmetic surgery, we
tend to think of boobs and botox – surgery for looks, not to save a life. Graham’s surgery to reconstruct his face and
skull is obviously a bit more pressing than boobs or botox, but at this point
his injuries pose no immediate threat to his health. So the doctors call the surgery that Graham
does NEED now “cosmetic.” He needs
cosmetic surgery, and the best opportunity for that to go well is for Graham’s
scrapes and bruises on his head and face to heal completely before taking a
scalpel to him. At this point the
Farmers Almanac would probably be a better predictor of his surgery date than
anything I could offer up. His doctor
today said “in theory we could wait months and he would be fine.” But still – it’s in 1-2 weeks J
Yesterday was obviously rough for
everyone. Graham struggled a lot to breath after having his ventilator tube
out. And amidst the gurgling, wheezing,
and weak coughing that seemed to expel every last bit of air he had in his
lungs, his doctors play ventilator yoyo with us. “We’re putting it back in. No we’re not.
Yes we are! No we’re not. Yes we are!
OK X-rays first!” It was a rough
night for Graham, and a rough morning as well.
His CO2 climbed from 42 to 56 (normal healthy humans walk around at
35-45) and this morning they had a cart next to his room, ready to put the tube
back in. They suctioned him one last
time and rolled him to his side. His
doctor checked him – and he was breathing fine.
His CO2 is now 35, and he has plenty of oxygen in his blood as
well. He is breathing room air on his
own, and for all intents and purposes doing it just as efficiently as you or
me. The first lady who came to me
yesterday and said “I’m a glass-half-full kind of gal, and I’m telling you he
is going to need to be reintubated” came to me and basically said she was
shocked but so happy for Graham, and chalked up her prognosis to panic. I think
her prognosis was actually probably right on the money, only it didn’t factor
in a fighter as tough and as blessed as Graham.
So Graham Hopper has had a restful day,
breathing wonderfully on his own. He
wasn’t all that responsive or active today, but that’s ok. He got a nice visit from his brothers and
Grandmothers, and his Grandpa stayed home with a cold but sent his love. It was a pretty casual day. The nurse even made room on the bed for
Lindsey to lie next to him for a bit and put her arm across his chest, which
was really cool and oh-so satisfying for his mom to experience and for his
grandmas to see. But all in all there
was not a lot going on in the ICU. And
then, late in the afternoon with Lindsey being the only other person in the
room, Graham’s nurse was cleaning some stuff up around Graham’s bed and said “I
think he said mom!” Lindsey got close,
and Graham raised an eyebrow. Graham’s
heart rate elevated, and he started vocalizing and moving his lips more. He said “Maaa. Maaaa.” And later something that sounded like
“I…..waaaaa….naaaaa.”
As I type I’m trying rank all the
miracles that Graham has seen as a result of so many people praying for him. And I can’t do it. It’s like asking which of your children do
you love the most? There’s no
answer. But this is huge. It is absolutely positively enormous. Such a huge step for Graham. I am so grateful that God answers prayers,
and more specifically that we are seeing him answer ours now.
#Prayers4Graham
Graham Update Day 13 (6/21/24) am
The first 18 hours after Graham’s
accident were without question the most painful hours of my life. Thinking of my sweet boy who had just been
through a horrific accident absolutely tore me apart. I can’t begin to describe the pain or emotion
that you feel as you replay the accident again and again in your head,
wondering what your son went through. To call it hard would be to call Mt.
Everest a mole hill. After about 18
hours though, I got into what I can only describe as “gameday” mode. I am totally focused on the future, riding
waves of joy from one tiny step forward to another. Around lunchtime the day after the accident
Lindsey and I both received priesthood blessings, and combined with so many
prayers (please keep them coming!) and a loving Heavenly Father, I have largely
been at peace ever since, just focused on loving my son and helping him get
better in any way I can.
There were two things, besides so many
people praying and my twice-daily keyboard therapy which you read now, that
really helped me cope with this crisis:
(1) Talking about Graham with someone and (2) gaining an understanding of
what Graham’s recovery will look like. For
me, talking to the hospital pastor was really very healing. I had been leery of the “paid shoulder to cry
on” and really wanted nothing to do with him when I first met him. But the first morning after Graham’s accident
he sort of thrust himself into Graham’s room and started talking. He just asked me about Graham. Who he is.
What he likes. And I cried like a
little baby while I talked about my sweet boy’s love of animals, dinosaurs,
Legos, and superheroes. I talked about
how he was just innately loving, and how everyone who meets him describes him
as “sweet.” I haven’t really spoken to
the pastor since, but that morning it was really helpful.
To better understand the future of Graham’s
recovery, I simply asked the doctors “where does he go from the ICU? (Neurosurgery floor) And then? (Rehab floor and/or rehab
hospital). And then? (Home).
How long? (We are really not
comfortable giving a long-term prognosis until 6 months or even a year).
So there it was. A step by step, high-level map of Graham’s
journey, and a rough time-line. It
helped. A lot.
Yesterday I managed extricate myself
from the hospital for about 6 hours to spend time with my other kids. I was driving with Brode and at one point in
our conversation I asked him what he was feeling about his best buddy Graham.
Brode:
I don’t wanna talk about it.
Me:
That’s ok. Any reason why not?
Brode:
Because I’m scared.
Me:
I’m sorry bud. What are you
scared of?
Brode: (Tearing up a bit now) I’m scared
that I won’t get to play with Graham for a really long time.
My heart absolutely ached to hear Brode
say that. Graham and Brode are BEST
friends. Brode is so protective of
Graham, they do everything together, and they love each other like no two
brothers I’ve ever seen. So I tried to
console Brode, who really opened up about how he felt for the first time, by
explaining that this is hard for everyone.
We all want Graham to be better NOW, but that it is just going to take a
long time. Brode nodded his head, and
then I explained that even though Graham won’t be home for a long time, Brode
will be able to play with Graham before he gets home.”
Brode: (Perking up a bit) Really?
Me:
Yeah. You can read him books, and
then maybe watch movies with him or play video games while he watches….
Brode: (Interrupting) Wait wait. So first I can read him
books. Then what?
Me:
Then you can probably take the iPad and watch movies with him.
Brode: And then what?
Me: Then you can probably take Graham
downstairs to look at the trains.
Brode:
Like in a wheelchair?
Me:
Maybe:
Brode: OK. So first we can read books. Second watch movies. Third, look at the trains. Then what?
Me:
Well, you can probably start building some small legos with him.
Brode: And then?
Me:
Well, soon after that he will probably come home
Brode: OK!
I had to spill my guts to hospital
pastor and see that Graham’s recovery looked like this: ICU > Neurosurgery floor > Rehab >
Home.
Brode needed to spill his guts too and
see that Graham’s recovery looks like this:
Books > Movies > Trains > Legos > Home.
I’m so grateful that our whole family is
being blessed, and that Brode is healing in his own time and in his own way.
Speaking of healing, Graham continues to
amaze us on lately what seems like an hourly basis. I was laying in my “bed” in Graham’s room
talking to my wife about what a miracle it was for her to hear Graham
talk. Then I noticed that Graham, who
was laying on his right side, was moving his arms – a lot. And they weren’t restrained! The last thing I wanted was for Graham to
pull out something important – like his EVD (brain drain) – so I stayed on the
phone but quickly rushed up to grab his left hand. He was scratching his left cheekbone, and
when I grabbed his hand he started scratching it with his RIGHT hand instead. He displayed VERY purposeful, dexterous
movements, and showed great proprioception.
So I grabbed each of his hands with my left and calmed him down a bit.
But then he lifted his torso off the bed by thrusting his right elbow into the
mattress, rolling his left shoulder forward a little bit more, and picking up
and carefully repositioning his head closer to his right shoulder. It told him “Daddy’s here,” and he squeezed my hand with both of
his. I asked him to squeeze my hand
again, and he squeezed it twice. Lindsey
was still on the phone and I was no-doubt sounding like my favorite team just
won the Super Bowl. She told me to ask
him to say ‘dad,’ which I did. Graham,
now in a totally different position in his bed, couldn’t quite say dad, but
vocalized and said “aaaaaaaaah.” Then I
asked him to give me a thumbs up, which he did very clearly with is right
hand. I told him “Great job Graham!” and
asked him to do it again: he gave TWO
thumbs up. Finally, I asked my sweet
son, now curled up in the fetal position with his arms folded across his chest,
to say mom. His response? “Ma-ma.
Ma-ma.”
Today the gameplan is to start helping
Graham get his days and nights back in order.
I think the daytime staff is a little jealous that Graham had so much
progress in the afternoon and late evening.
Couple that with an actual clinical condition called “ICU Psychosis” and
they are calling for lots of light and stimulating activity during the day and quiet
darkness at night.
The neurosurgery team also turned down
his EVD (brain drain). It’s draining
less and they are going to watch him through tomorrow to make sure he doesn’t
start leaking brain fluid anywhere, and if all goes as planned they will clamp
his drain and then monitor Graham’s ICP for a few more days before pulling it
out altogether.
At the end of rounds this morning as the
team was rolling their PC’s to the next room, one person said, almost as an
afterthought, “any reason why we can’t get Graham out of bed today?” The attending physician stopped. Thought for a bit. And said “No reason at
all.” So they are moving Graham to a
cardiac chair, which will help get him into any position from sitting up in a
chair to laying flat in his bed. So look
out, this kid’s going places.
#Prayers4Graham
Graham Update Day 13 (6/21/14) pm
Trapped.
That is how I think Graham must feel at times.
It is becoming very apparent that Graham
is much more aware of his surroundings than I previously thought. This afternoon I stepped out of his room for
just a few minutes to eat. He was sitting in his cardiac chair, which is
designed to help him lay down flat, or sit upright like you would at the dinner
table, and just about any position in between.
Graham had been pretty sleepy for most of the morning and early
afternoon, and his physical therapist was really unable to get any response out
of him. He wasn’t moving his arms,
responding to commands, or anything. He
just seemed to be resting peacefully.
She was in the middle of asking him to squeeze her hand, and as I
entered the room I interrupted her in mid-sentence by saying “How’s it going?”
Simple enough question. Didn’t mean a whole lot by it. But as soon as the words came out of my
mouth, Graham immediately started moving his hands and arms. He brought them both towards the center of
his body and then, one a time, started raising them towards his face. He grabbed my hands and he squeezed both of
them tight. Then with my hands in his,
he relaxed them on his lap. I asked him
if he could squeeze my hands again, which he did. I asked him to talk, and he struggled a bit
today to get any words out. His heart
rate elevated about 20 points as he groaned just a little, but didn’t get
anything out. Then he relaxed a bit more
as I told him “It’s ok Graham. Just rest
big guy.”
His physical therapist hadn’t seen any
of this before and was positively giddy to see Graham in action. Yet he was clearly fading back and forth
between methadone- and valium-induced sleep and his own state of awake. After resting for a bit, his physical
therapist asked him to give a thumbs up.
No response. I grabbed his hand
and asked him to give me thumbs up. He
flickered his thumb just a little but could not separate it much from the rest
of his hand. His therapist thought this
was a pretty big win, and congratulated him.
I knew our little fighter had a bit more in him though, and I asked him
once more to give me a thumbs up. He
pushed my hand away toward the outside of his body, brought his back toward the
center of his, rested his hand on his lap, and stuck his thumb straight up in
the air. His physical therapist cheered
him on, and Graham was done.
Graham has always marched to the beat of
his own drum, and people love him for it.
His does have a very shy, modest nature though that he has carried with
him since birth. His personality led
Lindsey and me to wrongly believe early on that Graham would have a hard time
making friends. We could not have been
more wrong. Graham is always the first
of our kids to make friends at the playground.
When kids come over he is always in the middle of the pack. Yet Graham does not seek attention. He detests it. We learned at his second birthday that you do
not shout for joy when singing Happy Birthday to Graham. You do not cheer him on publicly at his
achievements. You don’t act like he just
scored a goal in the World Cup when he goes pee pee in the potty for the first
time. You quietly, in a sidebar
conversation, tell Graham “great job” and give him a hug. Then he rocks that warm Grahammy smile, maybe
gives you a thumbs up or a fist bump, and goes about his business.
So for a kid who dislikes the limelight,
it should come as no surprise that he wouldn’t want to perform for all these
perfect strangers in the ICU. I’ve
noticed that Graham really won’t do anything for the doctors unless mom and dad
are at his side. This would be typical
of him before the accident as well. And
he certainly wouldn’t want to repeat any performance – like giving a thumbs up
or wiggling his toes – when a nurse or physical therapist cheers him on. That is the surest way to close Graham up for
good.
So fast-forward to later in the
afternoon. I was alone with Graham at
his bedside. He had been sleeping for
quite some time and he was just starting to wake up a bit. His heart rate was up and he moved his arms
around a little bit. I moved from the
recliner near the foot of his bed to the chair immediately on his left
side. We went through our normal routine
of wiggling toes and squeezing my hand.
He gave me a thumbs up. Then when
I asked him to say “mommy,” and I could tell he was struggling.
Last night when Graham spoke he was in
the fetal position, with his chin almost resting on his right shoulder. If you do that with your chin now, you will
feel your lower jaw naturally move forward in relation to the upper, and it
will close a bit. It will take almost no
effort close your mouth. But today, as
Graham struggled to speak, he was in a much different position. He was reclined slightly on his back, with a
rolled up blanket under his neck. That
tipped his head back and elevated his jaw, which is perfect for an open
airway. But if you do that now, you’ll
feel that your lower jaw naturally opens and pulls away from your upper
jaw. Try to put your lips together. It feels just slightly unnatural and takes a
tiny bit of effort.
Well it takes a lot of effort for
Graham. Putting his lips together and
saying “mama” yesterday was a lot easier than doing it today with his jaw
thrust high in the air. I watched him groan a bit as his lips quivered
and tried to come together. He clearly
tried to say his favorite word. But
today he just couldn’t do it. He
vocalized for about ten seconds. He
raised his hands in frustration and stiffened his legs. But he just couldn’t get the word out. Then a tear rolled out of the corner of his
eye and down the left side of his face and he just squeezed my hand. I know what he wanted to say. And I don’t.
Who knows what stories this amazing
little fighter, the boy who recites facts about sharks and dinosaurs and
follows each one with, “right Dad?” wants to tell – but can’t? He is so aware and must want to do so much,
but he can’t. Not yet anyway. I got a
glimpse of his frustration today, and it hurts me to think of how much he will
have to go through. But I take solace in
knowing that there has never been a boy who is more comfortable in his own skin
and mismatched shoes than Graham. Nobody
rolls with the punches saunters to his Lego table with a smile on his face like
Graham. And these last 13 days I can’t
imagine a child on earth who has been more blessed than Graham. His road will be long and full of frustration
but I know that with prayer and the effort of this little fighter, he will do
it. I’ll be praying that God continues
to ease Graham’s burden, and I hope you do to.
#Prayers4Graham
Graham Update Day 14 (6/22/14) am
I absolutely love the windows of clarity
that I see in Graham occasionally. There
are moments when a lot of the fog from all his drugs and his injury clear, and
I get a really good look at my son. This
morning at 7:30 when I woke up Graham was very active: he was raising his legs
towards his chest, moving them around to get comfortable, and finally crossing
one left over his opposite knee – his signature “comfy-cozy” pose that we often
see as he sleeps in the top bunk at home.
We are seeing these windows more and
more – usually towards the end of a drug dose and just before his next dose of
valium or methadone, both of which make him very sleepy. I did miss one such window at 5:00 this
morning – he was planting his legs into his bed and lifting his little bum
clear off the bed. His nurse said that
he was moving so much that she actually had to gently restrain him. He was not moving in a frenetic fashion, but
rather just consistent, deliberate moves to get comfortable. Graham, true to his fashion, wears two different
boots in the hospital – one to keep his heel off the bed and keep his toes
raised towards his shin, and another that inflates and deflates with air to
help with his circulation and prevent blood clots. They switch these boots between his feet
every two hours, but now he is moving so much that they are talking about
getting him out of the boots.
As you may have noticed, Graham’s
managing Graham’s sodium has been a constant battle. It’s been sort of like trying to balance a
golf ball on a tooth pick. You might get
it right where you want it for a bit, but then it quickly rolls off to the
other side. This reason for this has
been tied to his urine output, which is controlled by the hormone vasopressin,
produced by the pituitary gland. Graham
has been given this hormone through an IV drip intermittently at widely varying
doses, and they have yet to reign it in to where they want it. So now the endocrine team is involved. They checked his thyroid and some of the
other hormones produced by the pituitary gland and all of his levels came back
normal. They have also taken him off of
the vasopressin drip and put him on the synthetic drug DDAVP, which can be
taken via a subcutaneous shot in the stomach or orally with a pill. We don’t know how long-term he will have to
take this – perhaps for a few weeks or maybe for his whole life. But for now we are hopeful that it will
regulate his urine and sodium in a good way.
This is actually the only thing they are currently managing acutely –
meaning they are looking at in through a short-term window and micromanaging
with ICU attention. That acute
management is actually the only thing keeping Graham in the ICU for now, so
once they figure this out and are able to manage it chronically he will move on
to either the endocrine floor or the neurosurgery floor.
Speaking of neurosurgery – Graham
thankfully still does not need it. They
have now clamped his EVD (brain drain) and will monitor his ICP (brain
pressure) non-leakage for the next 2-3 days.
If all goes well, he will have his EVD removed this week. The only “invasive” tubing Graham will have
in him at that point will be his feeding tube and his standard intravenous
lines. Big, visible progress!
I asked about surgery again this
morning, and got the typical answer: 1-2
weeks. What did change is they are now
talking about doing his skull reconstruction and facial reconstruction in two
different surgeries. Their
thought-process has changed for a couple different reasons. First and foremost – Graham is doing
great. His ability to breath and move
around shows his great strength, and makes the doctors more convinced that he
can endure two surgeries. That leads to
the second reason for this recent change in his prognosis - in the big picture
for Graham two really is better than one.
Reason being that by fixing his skull first, they will have a solid foundation
to which they can anchor as they reconstruct his orbital bones and some of the
other bones in and around his mid-face.
So for now it looks like our next steps
are to leave the ICU, then get skull surgery, follow that with facial surgery,
and top it all off with a nice health dose of rehab and recovery. I’m so grateful that Graham has been blessed
so much, without question in direct correlation to the countless people praying
for him. We are so grateful for everyone
who loves and supports Graham, as well as a caring and expert medical
team. Should be a nice quiet day, so we
will continue to pray for him to get healing rest.
#Prayers4Graham
Graham Update Day 14 (6/22/14) pm
More positive progress for our blessed
little fighter Graham. They clamped his
EVD (brain drain) this morning and he shows no signs of increased brain
pressure or leakage. He has thus far
responded well to the drug that regulates his urine flow, which is his last
major hurdle before being ushered out of the ICU. Graham also cleared what must surely be one
of his most relieving hurdles: they
removed his foley catheter. That’s right
– Graham is peeing on his own again!
Graham did scare us at one point
today. We actually had visitors in the
room when his heart rate jumped about 50 points rather suddenly – so much so
that it triggered the alarm for the nurses.
A few seconds later he stopped breathing. His chest was no longer moving. The white line on his monitor that goes up
and down with as Graham breaths in and out flat-lined. 1 second.
2 seconds. 3 seconds. 4 seconds. 5 seconds. 6 seconds…. And then suddenly
you could hear Graham grunt as he slowly exhaled. Graham was actually just doing something we
all do every day – he was pushing out a poop!
No need to fear, bowel movements are here.
Aside from Graham having to…uh…work (it)
out for the first time, it was really a pretty sleepy day. Had a few times where he was pretty alert and
moving around, but for the most part he rested.
He has started to crack his right eye a bit, and one of our visitors
(you know who you are!) suggested that Lindsey and I move ourselves into his
field of vision so that he could see us.
We did, and sure enough our entrance and exit from what we assume to be
his line of sight was greeted with lots of movement and vocalization from
Graham. Probably too soon to know if he
was really seeing us or if it was just a coincidence, but it certainly wasn’t a
bad sign.
One thing I use to gauge Graham’s
progress is the language is DOCTORS use.
I’m going to do the non-pc thing and stereotype for a minute: The nurses, nurse practitioners, respiratory
therapists, physical therapists, and other medical professionals who work
closely with Graham every day are all very bubbly and friendly. They are absolutely experts in their fields,
but they use everyday language, and they get really excited when Graham makes
any progress – just like you and me.
Being such caring individuals, and working with parents who are
justifiably train-wrecks every day, I assume they have a tendency to spare my
feelings. His DOCTORS on the other hand,
very stoic personas. They are highly
analytical, pragmatic, and rarely show any emotion. They come across as absolute
truth-tellers. So when THEY use superlatives,
one way or the other, my ears perk up just a bit. Today one of his doctors, who you can tell
cares as much for Graham as anyone and whom I respect deeply, also happens to
be one of the most stolid. So when she
said “Graham’s recovery the last few days has been amazing” it really warmed my
heart. Graham has been so blessed, as
has our whole family, by all the prayers and support we have received. As I dad and as a believer – I see what I think
to be miraculous progress. Scratch that
– I know it’s miraculous. Even still, it
is good to know that the medical description (as I interpret it) of Graham’s
recovery is “AMAZING.”
The plan for tomorrow is as follows:
(1)
Continue to
monitor his EVD (brain drain – now clamped).
If his pressure looks good and he shows no signs of leakage, they will
removed his brain drain!
(2)
Continue to
monitor Graham’s urine output and sodium.
If they are able to get him in a healthy, consistent place for the next
couple days, Graham will get his ticket out of the ICU.
(3)
Meet with the
plastic surgeons. We are far enough
along in the game that I really need to wrap my head around what his surgery
looks like. It made Lindsey and me
nervous when Rocco got put under for 35 minutes about a year ago to have a tiny
blister-like cyst called a mucus seal removed from the inside of his cheek. And
even though I’ve been hardened a bit by living in the ICU now for the last two
weeks, I’m still nervous about my sweet little Graham going in for skull and
facial reconstruction. So I need to meet
with them for my own sanity, if nothing else.
(4)
Sit Graham up on
the edge of his bed! That’s right – our
little fighter is gonna workout his core and neck muscles with physical therapy
tomorrow. And yes, I will be THAT parent,
and remind them that Graham is a wee bit tender north of the neck tie.
Thank you all for your continued prayers
and support. It really, really helps.
#Prayers4Graham
Graham Update Day 15 (6/23/2014) am
Last night at his usual time (11:00)
Graham was very alert. He was moving his
arms a legs a lot, which I always love to see, and then I noticed he was really
fighting with both of the restraints that kept his hands from pulling out his
EVD (brain drain). So I went over to him
and said “Graham, you were in a little accident. We’re in a hospital, but we are going to be
just fine. You have a little tube in
your mouth to help you eat and the doctors don’t want you to pull it out in
your sleep. So these things hold your
arms back.” I said it slowly and very
deliberately, but he seemed to understand because as soon as I explained the
nature of his restraints he seemed to calm down immediately.
He went on to give us thumbs-up on
command, wiggle his toes on command, and squeeze hands on command. Then at one point he seemed to get really
frustrated. I didn’t really know how to
calm him down, so I just asked him if he wanted a hug. Immediately he stopped moving. I then put my head on his chest, and almost
immediately his little hands were on the back of my head. Anyone who knows me knows I love to hug my
kids, but I think that one has been the best one yet.
Yesterday afternoon we noticed that
Graham was really tugging at his little diaper.
He actually unhooked the tag on one side. Not wanting to be sprayed or worse, we quickly
secured it in place. But then he did it
again. At the point the nurse checked
his diaper and he was wet. So Graham was
just messing with his diaper to get it off because he was wet and
uncomfortable. Or was he?
This morning as the nurse practitioner
was checking on him, she noticed he was tugging on his diaper again. She immediately checked him, and he was
dry. We figured she would just fasten
his diaper back in place, but instead she grabbed the little bedside urinal and
held it in place. I then said, “Graham,
your nurse has a little bowl for you to pee in.
Go ahead and go.” And the yellow
well sprang forth! We wouldn’t have seen
a more beautiful water display at Trevi Fountain or the Bellagio Hotel. Graham really has his wits about him, and
each and every he takes moves forward.
They are late doing rounds today and
Graham has been very active so I don’t have much by way of time or content to
report, but it’s going to be a BIG DAY for a lot of reasons, so I should have a
lot for his update tonight. Thank you
all for the prayers- they’re working!
#Prayers4Graham
Graham Update Day 15 (6/23/14) pm
Today was a very big day for
Graham. There was some old news and some
“new” old news. A first. A milestone.
And a fresh new look.
The “old news” is the timeline for his
surgery. I met with his neurosurgeon and
the new attending physician today, and after chatting a bit we found out that
his surgery will take place in…… 1 to 2 weeks.
Actually 1 ½ to 2 weeks. So at
least they are switching things up a bit. We understand the complexity of the situation
and that everything is being done in Graham’s best interest, but it is still
frustration. Lindsey came to the
conclusion, and I agree, that from now on hearing the phrase “1 to 2 weeks” will
evoke a PTSD-esque response from us. 1-2
weeks for that shipment? THROAT
PUNCH! Follow-up visit in 1-2
weeks? THROAT PUNCH!
The “new” old news is that they are
again looking at doing Graham’s surgery in one step instead of two. In fact, they never were considering doing it
in two steps. We just had a rogue medical
staffer spreading some mis-information.
We did learn a little more about how his surgery will go, which is nice. They will make an incision that basically
runs across the top of his head from ear to ear. It will zig-zig through the skin, so as to
not make the scar as noticeable through his hairline as a straight line would
be. They will first repair his skull
using permanent plates. Then they will
repair his right orbital bone, since that is pressing up against his right eye
a bit today. Then they will repair his
other orbital bone, and continue down the rest of his face, still anchoring to
his skull. They are also proceeding this
Wednesday with a g-tube directly into his stomach for nutrition, and another CT
scan sometime between now and his surgery for his surgical team to review.
Graham has had a few periods in the last
few days when he has been really awake – times when he responds to every
command, communicates by giving thumbs-up, and even talking. These have generally come in 60-90 segments,
occurring 2-3 times per day. His
medication and injury-related fog seems to be lifting a bit though – today
Graham had a really good “awake” period from about 7:30 this morning until about
2:30 this afternoon. That’s a huge
stretch for that boy. And towards the
end of it, Graham sat up on the edge of his bed for the first time! He of course had help from his physical
therapist balancing both his torso and his head, but he really did a good job
holding himself up and in place using his own strength. It was incredible for us to see him with his
legs hanging over the edge of the bed as he held his head up and fired his abs
to hold his torso in place. The
highlight of that event was being able to hold his hands and help him pull
himself up, and eventually slip our heads into his chest while he draped his
arms around our heads with a big Graham hug.
Graham’s recovery will be long and hard, but if it is full of hugs as
rewarding as that I think we will all manage just fine.
The big milestone of the day was
unquestionably attempting to get his EVD (brain drain) out. As Graham has become more and more active, it
has become more and more of a worry to Lindsey and me that he might actually try
pull it out – and I cannot even begin to tell you what it disaster that would
be both in terms of infection-risk and damage caused by leaking spinal
fluid. There are times when his hands
are free during physical therapy and occupational therapy sessions. He has also become quite adept at worming his
way down his bed and increasing the range of motion in his arms, relative to
his head. Those factors, combined with
his trouble-free ICP (brain pressure) and lack of leakage meant it was time to
pull that sucker out. They applied some
numbing cream at about noon to the area around his drain, which is flexible
tube only slightly thicker than a coffee stirrer. Two hours later they cleared his room,
sterilized the environment around his head, pulled out the stitches that held
it in place, and pulled out the tube that ran clear into the center of his
brain. They then stitched him back up,
and Graham got the royal ICU salon treatment with a thorough hair and
face-washing. The result is an all-new
Graham: his abrasions look like mere
scrapes now and his face is all clean from surely-delightful mixture of dried
blood, dried brain fluid, bodily secretions, and hospital ointment.
For the next few days we will ramp up
Graham’s physical therapy, and begin a rather unorthodox treatment that I’m
certain will prove very effective. The
medical staff has been rotating Graham from his left side, to his back, and
then to his right side. His “side-time”
has really been mostly on his back though – he’s just been sort of propped up towards
his sides a bit with pillows. His back
and the back of his skull have been on his bed 24/7, more or less, and as a
result Graham has developed a little bit of a soft spot on the back of his
head. That calls for a lot of time
directly on his sides, which is now possible thanks to the absence of his
EVD. There is just one problem – Graham
does not like being on his side, and eventually squirms his way back onto the
comfort of his back. So Graham is going
to be receiving a steady dose of his unorthodox treatment per his neurosurgery
team: Snuggle Therapy. In order to convince Graham to stay on his
side, they are prescribing Lindsey and I to lay in bed with him and snuggle
him. We reluctantly (NOT!) started this
advanced regimen at 6:00 this evening, and it was a wonderful success. Graham started out facing me on his side, a
few inches away from my chest. He folded
his arms across his body, and slowly began to squirm – not onto his back – but closer
to me. Before I knew it his forehead was
pressed gently against my chest. This
actually made me quite nervous since he is just a little bit tender in that
region, but his nurse reassured me that if he felt any pain, he would let me
know. Graham quickly fell into a deep,
obvious sleep, and eventually I dozed off a bit as well. At one point I can remember waking up just a
little and hearing Graham’s classic loud nighttime-breathing, and feeling my
sweet little boy curled up next to me.
It reminded me of all those times he would ninja his way into our bed at
night, and slowly squirm his way into a full corpse press. It was awesome to feel like it wasn’t hurt
Graham lying next to me. It wasn’t
healthy Graham lying next to me. It was just Graham – our blessed little
fighter, getting a well-deserved nap after a hard day’s work.
We are so grateful for Graham’s progress. We attribute it entirely to both an expert
medical staff and a loving Heavenly Father, who is graciously answering the
prayers of friends, family, and perfect strangers far and wide. We will continue to pray for Graham’s
recovery, and are very thankful for everyone who continues to do likewise.
#Prayers4Graham
Graham Update Day 16 (6/24/14)
It had been a very busy 24 hours for
Graham. Let’s just say we are glad we
got that EVD (brain drain) out yesterday and not a day later, but more in that
in a minute. In general things will be
busier with Graham each and every day – they are ramping up his visits with
Physical, Occupational, Massage, Respiratory, and Speech Therapists. I will also take more frequent afternoons
away from the hospital to trade places with Lindsey and spend time with Brode,
Rocco, and Isla. So expect to see fewer
updates on Graham. No news is good news
though!
We realized yesterday that Graham was inching
his way around his bed, seemingly to pull at unsavory things stuck in his head,
like feeding tubes and EVDs. It was more
a joke than a real concern, until just before midnight yesterday when I heard
the nurse say, “Graham, did pull out your tooth?” (we’ve been watching his
loose tooth)
Me: “He pulled out his tooth?”
Nurse: “Yeah, it’s in his hand.”
Me:
(shocked) “That’s great! That’s
awesome!”
Only HE didn’t say didn’t say
TOOTH. He had said the queen mother of
all bad words (when it comes to Graham pulling things out). The T-Dash-Dash-DASH. Graham had pulled himself closer to the
bottom of his bed to gain some slack in his restraints and pulled his feeding tube
out. I had misheard – it was his TUBE,
not his TOOTH, which was in fact resting in his victorious little paw. It is a blessing though that it was his
feeding tube and not his EVD that he pulled out. That would have been a medical disaster, and
thankfully that is no longer possible since it was removed yesterday
afternoon. I’m so grateful it wasn’t in
a day longer.
Taking the feeding tube out is still a
problem though. Because of all the
breaks in his mid-face he is a “difficult insertion.” He also needs to keep his nutrition up to
prepare for his surgery. Still another
reason: switching from a feeding tube to the nutrition he would get from an IV
would throw a wrench into the work they are trying to get done as they zero-in
on a proper dose for his DDAVP (for urine regulation, which affects his sodium),
which would also delay his departure from the ICU. So leaving it out was not an option – they had
to force Graham to gag it back down, then give him an x-ray to make sure it was
placed properly. Long night.
Things did not slow down in the morning
either as we met with both the neurosurgeon and the plastic surgeon. His
plastic surgeon was very nice, and answered a lot of questions about how his
surgery will go. Typically with a patient like Graham, they need one of two
solid foundations to build upon as the reconstruct his face – the skull or the
lower jaw. In Graham’s case his lower
jaw is in tip-top shape, while his skull obviously isn’t. That would make it seem like the jaw would be
a great thing to anchor to, but there is one big problem. To anchor to Graham’s lower jaw, they would
need to wire it shut. Not an issue,
except that in doing so it would compress the rest of his face – not something
you want to do when you have a broken piece of your orbital bone resting on
your eye as Graham does. So anchor to a
repaired skull they will, and the plan is still for it to happen all in one
surgery.
The meeting with his neurosurgeon was
good also. He said he is looking at the
end of next week for Graham’s surgery, provided he can coordinate it with both
the O.R. and the plastic surgeons.
One funny thing about Graham’s
neurosurgeons – they always seem to come in when Graham is in his deepest
sleep, and therefor never responsive. WE
can see thumbs up and wiggling toes and speech, but since THEY have to go on
what THEY SEE and not on the words of a hopeful parent, they always leave the
room saying they want to see him be more responsive before they operate. Today was no exception – Graham had received
his 12-hour dose of methadone just a couple hours before his doctor showed up,
so we didn’t expect a whole lot. His
surgeon said “Graham. Wake up. Graham – can you give me thumbs up?” Nothing.
“Graham, can you hold up two fingers?”
Much to our surprise, he INSTANTLY flashed his best peace-sign. “Graham – now can you do the other hand?” Boom!
Another peace-sign. The doctor
left satisfied, we had seen a new trick, and we were moving on with our day.
Graham had successful visits from his
massage, speech, respiratory, occupational, and physical therapists. And in the midst of it all, he did it
again: he inched his way down his bed to
gain some slack in his restraints and he pulled his dang feeding tube out. We like that he is alert and coordinated
enough to do it; we just don’t like that he ACTUALLY does it. And this time, when his nurse tried to put it
back in, he was awake enough to fight off reinsertion. He fought so hard that he actually opened a
small bleed in the back of his throat. After
that the thought initially was: let’s
leave it out until they put the G-tube in his stomach, but that was shot down
because they are very concerned about him keeping his nutrition up in advance
of the “big” surgery. So they eventually tried again to reinsert his feeding
tube, and this time they were successful.
In advance of his surgery at the end of
next week, Graham needs to get several things done: insert his g-tube into his stomach, bypassing
the throat for direct feeds; get a CT-scan so they can get a better look at his
skull and mid-face now absent his swelling; and also get an MRI so they can
take a closer look at his pituitary gland, optic nerve, and the rest of his
brain. Graham’s CT-scan will take place
tomorrow morning at 5:00, and they are still trying to schedule his G-tube and
MRI. Mix in a whole lot of therapy, and
he’s gonna be a busy little man!
Speaking of MRI – one thing that they do
plan on looking at is his optic nerve.
Graham has sporadically flickered his pupils under light, but hasn’t
done so for a few days. As of tonight he
has not moved his eyeballs or opened his eyelids since his accident. The one exception is the occasional crack in
his right eyelid, but that it more likely caused by a broken bone pressing on
the back of his eyeball than it is him actually opening it. As time goes on and other parts of his person
begin to recover, this makes the medical staff increasingly concerned that he
may not regain his sight. Obviously, as
his parents, it worries us too. A lot. The thought of Graham unable to ever see his
Legos, brothers, light sabers, or dinosaurs again rips us apart. It is a thought we try to cast aside, because
it’s still too early to know anything for certain. But when doctors tell us
they are worried, that’s a concern.
At the local congregation (ward) of our
church on Sunday, we will be praying and fasting both for Graham’s recovery in
general, and specifically for him to open his eyes again and see. If anyone of you should mention him in your
own prayers, Lindsey and I would like to ask that you also ask for his sight to
be blessed.
Thank you all for your prayers and
support – they are working in a big way!
#Prayers4Graham
Graham Update Day 17 (6/25/14)
Lots of news today, and a little bit of
action.
We started off the morning with rounds
and news from the Doctors: Graham is on
the surgery schedule to get his G-tube put in.
Hallelujah! No more obtrusive,
gagging, irritating tube stuck over his tongue and straight back into his
throat. I told his nurse “I’ll believe
it when he see him rolling out the door” because their surgery schedule here is
so fluid, and it totally makes sense that he would get bumped for someone who comes
in needing life-saving surgery. Still,
as the day wore on he stayed on the board for a 3:15 date with the operating
room. His Nurse Practitioner did let us know
early on that he had pretty major surgeries on the docket both before and after
him, so it was possible that he would get bumped but that it “WILL happened
today.” Unless it doesn’t. At 2:00, as his nurse was preparing him for a
“road trip” when we were informed that the surgery before Graham’s was taking
too long, and his surgery would NOT be taking place today. So we’ll keep that tube in for a bit and
Graham will continue to roll with it like a champ.
Also during rounds someone announced
that they discovered during his evaluation that Graham had lost his loose baby
tooth. This was news to us, and sort of
a bummer. Graham’s been waiting for that
thing to come out for MONTHS, and he will definitely be bummed to learn that is
was lost. They even checked his past
chest and stomach x-rays to see if they could find it hanging around somewhere,
but to no avail. We were a bit skeptical
of this news, however, so we went into their little supply cabinet, unwrapped a
sterile tongue depressor, and took a peak.
Sure enough the tooth was still there, it was just hanging down a bit
below the top-line of his other teeth.
So we chased down the team of doctors as they moved along to the next
room to let them know the tooth was still there. They acted a bit shocked, but then one of
them wheeled back around and pulled it out.
So Graham has a very expensive rendezvous with the Tooth Fairy at a date
TBD. Brode was here building Graham a
new Lego set (more on that later), so I was sure to set the stage that the Tooth
Fairy paid more for teeth lost in the hospital, so as to not be suckered in to
paying Brode the same ridiculous amount that Graham is going to get.
Speaking of Legos, Graham’s favorite
nurse brought in a wonderful surprise earlier in the week – a new Star Wars
Lego set for Brode and Rocco to build for Graham. We sort of decided that the likelihood of it
coming back to the hospital in one piece after being exposed to Rocco at home
was really low, so instead we brought Brode back into Graham’s room this
morning for a few hours to build Graham a new Star Wars set – complete with
Anikan and R2-D2. It was very cute to
watch Brode build and tell Graham all about it as he did. All of Graham’s nurses are great, but this
one in particular deserves some sort of national award, and not at all because
she bought him a gift. She is so caring
and gentle with Graham. She dotes on him
and treats him like you would expect an overtly loving mother to treat a sick
child. We are so grateful for her and
the entire staff. But especially for
her.
Graham continues to make great progress
in physical therapy. Two days ago he sat
up on the edge of his bed for the first time, although with lots of help from
PT stabilizing his core and head. It’s a
lot of work, and there are some great exercises he can do from there. If you are sitting in a chair right now, and
you pull yourself to the edge, you’ll probably notice that you round your back
and shoulders. Graham’s natural posture
right now is no different. The cool
thing today is that when prompted to sit up straight and hold his chin up, he
did so almost immediately, and so perfectly that you could have rested a board
flat against his back. Must have been
all those times singing “The Penguin Song” and marching around like a
penguin. Once in that position, he was
able to anchor his arms to the bed and hold himself in place, untouched and
unassisted, for a few seconds. Great
feat of strength from our blessed little fighter!
One silly thing that we always do with
our boys is ask them at random times:
“Who’s my boy?!” They have been
we-trained to fire back in an excited voice: “ME!” Today we asked Graham “who’s my boy?!” he
fired back in less than a second by shooting his hand straight up in the air,
leaving no doubt to anyone in the room as to who’s boy he is. The traumatic brain injury cat may
temporarily have Graham’s tongue, but his mind and reflexes are as sharp as a
tack.
The biggest piece of news has actually
been pouring in through the medical rumor mill for a couple days now, but has
finally been confirmed and (knock on wood) set in stone. Graham will undergo his major reconstructive
surgery on Friday June 27, 2014. So the
timetable went from 1 to 2 weeks to 1 to 2 days. Well, 2 days.
OK 37.5 hours but who’s counting?
The primary function of the surgery will
be to reset Graham’s skull and fasten it in place with plates and screws. They will also repair both of his upper
orbital bones. Neurosurgery will perform
this part of the operation, with plastic surgery on hand to assist. Most of the damage to Graham’s mid-face
occurred in bridge of his nose, and they are actually going to wait 2-3 months
to put that back together, if it is even needed at all. There is a chance that once they properly
align his skull, things in that area just sort of fix themselves. So Graham will be out of his room for 10-12
hours, although the actual time spent by the surgeons from scalpel to stitch
will be about 4 hours. This has been
confirmed as of 5:00 by his neurosurgeon, although the information we got
starting earlier in the week varied quite a bit. We heard everything from a surgery that would
be done in two completely separate parts by the neuro and plastic teams, to a
massive surgery that would address EVERYTHING and last up to 12 hours. At any rate, we are relieved that Graham has
progressed well enough to be ready for surgery, and that we have removed a lot
of the uncertainty that we’ve (very understandably) had since arriving two and
a half weeks ago.
Please continue to pray for Graham and
his eyesight. And if you can spare a few
extra seconds, pray for his surgeons on Friday as well. Thank you all so much for your prayers and
support – we have really had our burden as parents lifted as a result.
#Prayers4Graham
Graham Update Day 18 (6/26/14)
Graham made more progress today in terms
of his therapy, and we learned of some changes to his surgery tomorrow.
When one of Graham’s doctors came in to
check on him at the end of the day yesterday, he stood at the foot of Graham’s
bed, stared at Graham, and said, “I wish I knew what you were seeing and what’s
going on in there,” referring to
Graham’s eyes. So that made us wonder –
what exactly is going on? Graham is
known to hate his eye checks – which is completely understandable when you have
two fractured orbital bones and strangers come in all day and night to pull
your closed eyelids apart. Every time
they do it he squints and grimaces as they quickly run the flashlight across
his pupils, but still - they have to do it.
His doctor’s comments stuck with us however, and so after his night
nurse checked him for the first time yesterday evening, we made sort of a
pushy-parent request: “Next time you
check his eyes, try holding them open to see if he will tolerate just having
his eyes open, and THEN run the flashlight across his pupils.” They always sort of do it all in one motion
to end the pain as quickly as possible, but we wondered if it was the light in
his eyes or the touch to his eyelids and orbital bones that caused him to
squint and grimace. The next time he was
due for a check-up, she tried it, and sure enough it was the bright light that
makes Graham squint, not the touch. So
clearly there is light getting in through his pupils, through his optic nerve,
and to his brain. This is a wonderful
sign and a direct answer to prayers. We
still want him to open his eyes, track things with his eyeballs, and have his
pupils respond, but we’ll take whatever we can get while still praying and
fasting that his eyesight fully recovers.
Graham had a wonderful day of physical
therapy. He kicked his legs from his bed
on command and hit the outstretched hands of the medical staff. He also started waving “bye.” We had a few different visitors that he knows
today, and when they left I told him they were leaving and asked him to wave
bye. Of course he did just that, ever
the polite and obedient little lad that he is. He also crossed his fingers on
command like you would if you were lying to someone or hoping for good
luck. Then another time when we asked
him to cross his fingers, he extended both of his index fingers and made a
perfect ‘X’ with them in front of his chest.
He also did a great job of showing the staff what T-Rex arms look like
by curling two fingers on each hand and pulling his hands up high to his
chest. So lots of great things to see in
terms of comprehension, coordination, proprioception, and dexterity.
The highlights of the day came during
and shortly after physical therapy.
Graham has had time sitting on the edge of his bed for each of the last
two days – working on his core strength and head control. Today he did the same thing, only sitting on
a short bench on the floor. The thinking
was that since (a) he’s had a head injury and (b) he’s got his eyes closed,
having his feet on the ground would give him a better sense of balance. It worked like a charm. He had long periods of holding himself
upright and balancing his core. And then
came the really fun part – Graham stood up!
They helped him balance his chin on the way up, and placed hands on his
knees and lower back to make sure nothing caved in unexpectedly, but when they
asked him to do so he immediately fired his quads and stood himself up, with
very little help. As he did so he popped
his chin up, and everything seemed to click.
He had a little help to balance but otherwise help himself up entirely
on his own until he got tired, at which point he carefully sat himself back
down. Then he did it all over again,
needing even less help balancing. It is
a miracle – a direct result of fasting, prayers, and God’s protection - that
this little boy went through an accident that would have any of us pushing up
daisies just two weeks ago, and yet here he is standing up. I don’t think Tchaikovsky himself could have
composed a more beautiful series of movements than that little fighter standing
on his own two feet.
PT then sat Graham in his chair for a
while longer, and then it was time to move him to his bed. Usually they recline his chair to a laying
position right next to his bed, and then using the sheets underneath him three
or four people perform what can only be described as a gymnastics maneuver to
slide him onto his bed carefully while simultaneously getting out of the way on
the near side, and reaching from the far.
Graham’s newfound progress standing up made me very confident, however,
that I could just pick him up myself without hurting him – just like I do all
the time at home. So I cleared it with
his nurse, and held my boy for the first time in nearly three weeks, and then
returned him to his bed. Hold your
children tight whenever you can, because waiting two and a half weeks is
entirely too long.
Now the news: Graham’s big surgery is
tomorrow – a well-planned, coordinated production starring Bruno Braga
(neurosurgeon), Christopher Derderian (plastic surgeon) and of course
Graham. Yesterday we learned that
neurosurgery would do their thing to Graham’s skull and orbital bones, and that
plastic surgery would be assisting but otherwise holding off and doing their
part a few months down the road. That
has changed – they are going to everything they need to do in one fell
swoop. So I’ll try my best to explain
everything that Graham has going on, and what will happened tomorrow.
Graham has a massive skull fracture that
actually runs across his entire forehead.
If you were put your finger on your left temple, and then draw a line
across your left eye, the bridge of your nose, right eye, right temple, and
then circle back around the top of your entire forehead – that is one big piece
of Graham’s head that is broken off and shifted to the left side of his
face. The breaks are clean through the
skull and orbitals, but pretty messy in the bridge of his nose and in his left
temple. He also has breaks in the base
of his skull & opening into his frontal sinus, and small cracks in both of
his cheekbones and behind his left upper jaw.
So there will be three main parts to Graham’s surgery:
First, they will address the breaks in
the base of his skull and into his frontal sinus. Those breaks are lined up nicely, and the
bone will heal on its own with time.
They are concerned that the break in the base of his skull could cause
another tear in membrane surrounding his brain (the dura), so they will reinforce
that area with sort of a synthetic membrane over those breaks. The best explanation I got is that they will
just “slide it in” however they manage that.
His frontal sinus is a bit different.
This area is typically filled with air, but in Graham it filled with
brain fluid when his dura tore and leaked out through his nose. Having that exposed poses a risk of infection
even two or ten years down the road, so they will take some tissue from inside
his skull, create a flap, and seal it off.
This entire first step is a change from what we understood at the end of
the day yesterday.
Once the interior parts of his skull are
shored up, they will essentially lift out the big, broken off part of his
skull, “sand down” the edges that have started to heal, put it back, and plate
it together using polymer strips which will slowly dissolve over the next 12-24
months. Repairing his skull in this
fashion is what we heard would compose Graham’s entire surgery when we spoke to
medical staff yesterday afternoon. That
is a major event in and of itself, but steps one and three were added to it
today.
The last thing they will do is repair
the bridge of Graham’s nose. His
cheekbones and the area behind his left upper jaw are stable and aligned well
enough that they will not need to address those surgically.
So that is it. 4-6 hours from scalpel to stitch, then bring
him back to the ICU, let him recover for a few days, get his g-tube put in, and
it should be time for a transport to the rehab hospital and a whole lot of
rehab. At one point I said that Graham
would not need brain surgery, and that has proven to be only partially
accurate. He will not need surgery ON
HIS BRAIN, but because they are doing so much around his brain, Dr. Braga was
very clear – Graham is having brain surgery tomorrow. It’s a big deal even though it is not
emergent in nature. It is complicated,
and carries with it many risks. We are
praying and fasting that Dr. Braga, Dr. Derderian, and the entire medical staff
will have steady hands and clear minds.
And we’ll fast on Sunday again that his vision will be restored. We are so grateful to all who have prayed for
and supported Graham during his entire recovery thus far, and we ask that you
pray again for Graham and his doctors as he prepares for this next big hurdle
tomorrow at 7:30 central time.
#Prayers4Graham
Graham Update Day 19 (6/27/14) Brain
Surgery Recap
Obviously a huge day for Graham. I’ll recap his surgery – what they found,
what they learned, what they fixed – and explain Graham’s next steps from here.
The morning started off with Graham getting
a good head-scrub in bed; tons of different attending doctors, fellows,
residents, and nurses coming to check on him; people bringing things for us to
sign; and Surgeons explaining exactly
what they would be doing to help Graham.
They had the Operating Room scheduled for 7:30, although they didn’t
leave until after 8:00 and they didn’t actually make their first cut until
right about 10:00.
To prep Graham down in the O.R., they basically
returned him to the state he was in when he got to the hospital – sedated,
anesthetized, central and arterial lines in, and breathing on a
ventilator. Once they had him all hooked
up to everything and the anesthesiologist had his vitals and consciousness in a
good place, it was time to cut.
They incision they made to access his
skull and face was made with a wavy line (wavelength about 2 inches, with a
height of about an inch) that went from ear to ear across the top of his head,
so that his scalp was pretty well divided in two pieces. They left the hind piece in place for the
duration of the surgery, as Graham had no damage to the back half of his
skull. They then peeled the front of his
scalp forward towards his face; pulling it all the way down to reveal the bridge
of his nose and his orbital bones. This uncovered
Graham’s entire forehead, which had been broken in one piece, more or less,
from temple to temple – across his orbital bones and the bridge of his nose –
and rounding up around the front part of his forehead. When his plastic surgeon explained his role
to us before the surgery this morning, he said that actually fixing Graham’s
nose was very minor, and that his role was mostly consultative because Graham’s
break was so odd. He said they almost
NEVER see a break like his, and so it was helpful for Dr. Braga to have a
plastic surgeon present, given that plastic surgeons typically deal with
orbital bones more often than brain surgeons do.
After removing Graham’s forehead, they
began to inspect the areas around the brain.
Graham did in fact have significant rips in the dura, which is the
membrane that surrounds the brain and spinal cord. Graham’s was torn at both temples, which Dr.
Braga fixed by stitching patches into place.
The dura was torn in a third place as well – clear at the base of the
skull, which made for a tricky repair.
You can’t just lift a brain out of the skull like you see in cartoons,
which means Dr. Braga would not have direct access to the tears in the base of
Graham’s dura. So he carefully slid a
patch underneath Graham’s brain, held it in place as best as he could with
three stitches, and then sealed it in place by peeling flesh from other parts
of the interior of Graham’s skull and using it to seal the patch in place. He also made a flap from the same skull
tissue to seal of the frontal sinus, which had become exposed during Graham’s
accident.
All those soft tissue repairs took about
2.5 hours, and so then it was time to reconstruct his skull. When a piece of the skull breaks away from
the rest, it loses tension and actually shrinks just a bit. It happens every time, and it happened to
Graham. The result is the piece of skull
(Graham’s entire forehead) that they were trying to put back in place no longer
fit just right – it was too small. So
they cut the bone from Graham’s forehead into several smaller pieces, and then
left space between all the pieces as they put them back together – allowing for
them to grow together over time. All
these pieces were held in place using polymer plates and screws which will
dissolve over the next 1-2 years. Once the skull was put back in place, plastic
surgery worked on his nose a bit, and they stitched him up.
When Dr. Braga came to explain how the
surgery went, he sat down in a rolling chair at the nurses desk in Graham’s near
the foot of his bed room (Graham was still downstairs), rested his elbows on
his knees, and began to explain all of the above to us in his usual stoic
fashion. Clearly, having your hands in
someone’s brain for four hours left him somewhat drained, but he did a great
job of explaining everything to us.
After covering the soft-tissue repairs, he start to say everything went
pretty well, but then he stopped himself.
Our stolid brain surgeon perked up with pride, put on his brightest
Brazilian smile, and said “I think his skull looks GREAT!” And it does – Graham looks like himself
again. His skull and face are no longer
oblong, but rather nice and symmetrical.
If you ignored the stitched waves across the top of his head and some
still-healing abrasions on the right, you almost couldn’t tell Graham had been
in an accident when he came back to the room.
That will change over the next few days.
He’ll get really blue in the face and swollen, but I can promise you
he’ll look better than you would if you got your face peeled off your skull!
Dr. Braga also discussed Graham’s brain
injuries now that he got a better look at them.
He clearly had contusions on his frontal lobe and frontal cortex. But these really didn’t concern Dr. Braga at
all – those are parts of the brain that often get pieces CUT OUT of patients
entirely who are undergoing various brain operations, and those patients won’t
lose any functionality at all. He also
reviewed Graham’s CT scan, and said he did not SEE anything that made him think
Graham would have any long-term deficits as a result of his accident. But looks can be deceiving.
Dr. Braga went on to say that there
could be damage that wouldn’t be visible to his eye or a CT scan. This damage would be caused by the coma that
Graham entered in when the accident first occurred (news to us). Comas are ranked on a scale of 3-15. 3 is what we typically thing of when we see
someone comatose in a movie – no movement, no response to stimulus, no
purposeful movement. 15 would be you and
me, walking around with no head injury whatsoever. At the time of Graham’s accident he was a 5,
which a quick Google search will tell you is in the range that includes very
high risk of death. They don’t know how
long he would have been in that coma, because they purposefully sedated him for
a time after the fact. But anytime you
enter into a coma, you run a risk of losing brain function long-term. So what is the prognosis for Graham? Same as it has been – only time will
tell. It may be as long as a year before
we fully understand what the future holds.
But after seeing how blessed Graham has been in his recovery thus far,
and with the thousands of people praying for him across the world, would you bet
against him?
So now our little fighter is resting in
his bed. He returned to his room
breathing on his own, sans ventilator, and when asked he happily gave some
thumbs-up and even stuck his tongue out.
He is now resting peacefully with a nice cocktail of morphine, Tylenol,
methadone, and valium, and getting ready for the next big hurdle – a long road
of rehabilitation. He’ll get an MRI and
a G-tube next week, and once they get his urine regulated to the point where
his doses of DDAVP consistently last 12 hours – no more, no less – he will be
released from the ICU and eventually make his way to Baylor Children’s Rehab
Hospital in downtown Dallas.
We thank you from the bottom of our
hearts for your prayers and support.
Neither one of us slept much the night before the surgery. We were anxious, nervous, probably a little
scared. Lindsey put it best – no six
year-old should have to get brain surgery.
But when we think of Graham and the fight inside of him, and then when
we think of a loving Heavenly Father and the masses invoking his name on our
son’s behalf, we knew Graham was in good hands.
Thank you all for increasing our faith, and blessing our son through fasting
and prayer.
#Prayers4Graham.
Graham Update Day 20 (6/28/14) - 1 day after brain surgery
Today started with a scare. I woke up to an unfamiliar voice doing a
lengthy exam on Graham. Calling his name
a lot. Asking Graham to do various
commands over and over. Then asking me,
still half asleep on the couch-thing near the foot of Graham’s bed, if I had
noticed anything unusual during the night.
I said I hadn’t but that I was mostly asleep so I probably wasn’t the
right person to ask. By this time I
recognized him – it was one of the neurosurgery residents. He instructed the nurse to hold all his meds,
hold everything until Dr. So-and-so came by (someone filling in that morning
for Dr. Braga). And then he left.
I asked the nurse what all the hub-bub
was about, and she said that following Graham’s CT at 5:00 this morning, the
resident had checked the CT scan and found a fairly significant clot in the
front of Graham’s skull. Immediately my
heart sank. I asked if that was
something they would try to remove, and she said “well it’s not a really big
clot, but apparently it’s not small either.”
I asked if that was something they would need to remove surgically, and
she said “maybe, or they might just let it dissolve.” Either way – it doesn’t take a brain surgeon
to realize you do NOT want blood clots in your skull.
The resident came back later with Dr.
So-and-so, and after checking out Graham he looked at the CT scan and said
“that is NOT a clot. That’s just fluid –
it’s something we expect to see and that we almost always see. No cause for concern, let’s restart his meds,
and it’s back to business as usual.” So
it was a total false alarm, and I’m grateful that the well-intentioned resident
proved that he still has a lot to learn.
Aside from that it has been a slow,
quiet day – which is exactly what we hoped for and expected. Graham’s face is swelling quite a bit as
expected, and we are still waiting for him to open his eyes, which are honestly
probably to swollen to open right now anyway.
How swollen? Let’s just say that
if Graham were in a Rocky movie, he would be telling Mickey “cut me” right
about now.
As we settle into our normal stride
following the hurdle that was Graham’s surgery, I’m glad to have a quiet moment
to reflect on all that is and has been done for our family. The number of people that have worked and
sacrificed to be there for us are almost too many to count. A lot of people have asked – how do you guys
handle this so well? The answer is easy
– when you have so many people praying for you and reaching out to help and
support you, how can you not?
One thing that is happening that we
thought we should mention is courtesy of Amy Sanford, a former coworker of
Lindsey’s from many years ago. Amy now
manages the Chili’s Restaurant on Broadway Avenue in Boise, Idaho, where
Lindsey and I met and started our family.
Even though we haven’t seen Amy in many years, she took it upon herself
to have a Prayers4Graham night at her restaurant. Many thanks to both Amy and the Corvette Club
of Idaho for putting this on, so feel free to attend on July 8 starting at 4:00
to hang out with others that are on “Team Graham.” We’ll be grateful for the prayers and
awareness, and I know Amy will be grateful for the business that she definitely
deserves.
One thing that we are still concerned
about is Graham’s eyesight. He has not
opened his eyes since the accident, so starting tonight our family and
congregation at church will be fasting for Graham’s eyesight. We’ll skip two meals (essentially 24 hours
without food or drink) and pray earnestly for Graham to be blessed so that he will
open his eyes and see. So tonight and
for the next day as you pray for Graham, please do so both for his recovery in
general, and specifically for his eyes.
Thank you all so much – we could not do
this without you.
#Prayers4Graham
Graham Update Day 21 (6/29/14)
Last night and continuing on into this
afternoon, Graham had some irregular patterns in his vital signs. It would usually begin with a little bit of
coughing – which is very normal and healthy for him –followed by Graham holding
his breath for 5-10 seconds, exhaling, and then having his heart rate jump up
to 180-200 beats per minute from his current “normal” rate of 120 beats per
minute. This freaked us out the first
time it happened, but he would always recover from it within seconds, and his
breathing and heart rate would quickly get back to normal. The cardiac team looked at his complete
vitals record for the past 12-24 hours and determined that this was a very
normal reaction given his recent surgery.
It’s likely that coughing is putting some pressure on his head – which
has sort of been put through the ringer recently – and then because his
sympathetic nervous system is just a little out of whack from the surgery, his
heart rate goes into “fight or flight” mode as he feels pain. It’s definitely nerve-wracking, but as of now
it is no cause for alarm, and has gotten less “severe” as the day has gone on.
Aside from that it has been a very quiet
day. Graham’s face is now doing its best
Rocky impersonation – he looks like he just finished the 15th round
vs. Apollo Creed. His eyes and parts of
his head are quite swollen and a bit red.
But this was completely expected, and compared to how he looked during
his first week in the ICU, Graham looks ready for a GQ photo-shoot. Today has also been a very sleepy day – not a
lot in terms of movement or responsiveness, but that is probably just the brain
surgery, valium, methadone, hydrocodone, and morphine talking. I’m sure once we get a few days past all that
he’ll be much more active like he was before the operation.
In the wake of Graham’s surgery, the
efforts of the endocrine team to regulate his vasopressin (pituitary hormone
that controls urine flow) have been thwarted a bit. They want to get Graham to the point where
his doses last him exactly 12 hours.
They know when a dose wears off because when it does he “breaks
through,” which is ICU-speak for “pees like a racehorse.” Before his surgery they had him on doses that
lasted very close to 12 hours on the dot, but since his surgery they have been
all over the board. This is very common
and does not indicate any risk to his health; but that magical, consistent,
12-hour dose IS Graham’s ticket out of the ICU.
And given his now-recent history of surgeries messing with his
responsiveness to the drug, the endocrine team now prefers that Graham remain
in the ICU until after his G-tube surgery, when they will seek once and for all
to get him normalized. That should
surgery should take placed Wednesday, so if things go as expected he should be
out of the ICU at the end of this week or early next week.
We are grateful for all those who fasted
for Graham’s recovery and his eyesight today and for everyone who prays for him
continually. Graham has been blessed so
much thus far, and we are confident and hopeful that as he recovers from his
surgery, he will be able to pick up where he left off with his physical therapy
and open his eyes for the first time as well. We have seen so many miracles with Graham
already, and look forward to seeing more in the coming weeks. Thanks again for your prayers, and please
keep them coming!
#Prayers4Graham
Graham Update Day 22 (6/30/14)
Today was unquestionably the best day
that Graham has had since he came back to his ICU room from his operation. His heart rate stayed within the norms – a
good sign that his sympathetic nervous system is working well again. He had good periods of alertness, had a few
“firsts,” and has almost regained completely the progress he had made in
physical therapy before his surgery. We
also got a lot of great feedback, opinions, and education from the doctors. I’ll share some of that education here, but
I’m not sure it makes any sense at all so feel free to skip the next two
paragraphs.
Graham’s endocrinologist sat down with
me for about ten minutes to better explain what was going on with Graham’s
vasopressin (hormone in the pituitary gland that controls urine), why they need
to do what they do now, and what it means for Graham going forward. He gave a great analogy, which I will try to
relay now: So pretend all the water in
your body is represented by water in a bucket with a hole in the bottom. Water gets poured in the top (drinking
through the mouth) and comes out the bottom (peeing it out). Now imagine there are baseballs in the bucket
– that would be your sodium. When the
water in your bucket is at a nice happy medium, you have a normal ball-to-water
ration. Same goes for your body and
sodium – medium water retention – normal sodium level. Now imagine you release a LOT of that water
from the bottom of that bucket and don’t replace it – the number of balls in
the bucket remains the same, but there is less water – so ball the ball ratio
is up. So when you pee too much, and
don’t drink it back, your sodium level goes up – because the number balls in
the bucket (or sodium in your body) is the same, but the ratio is higher
compared to the amount of water in the bucket (your body). Same thing when the water in your bucket is
too high and you don’t pee enough – you now have a TON of water compared to
balls in the bucket, and so your sodium level goes down.
Graham has not been producing the
hormone that tells his body: DON’T
PEE! And so what his body wants to do
now, absent his naturally occurring hormone, is pee like a racehorse. When he does that, his sodium level goes up
because there is less water in the body, since he is peeing it all out
uncontrollably. So they give him a drug,
and he pees a normal amount until his DDAVP wears off – and then he pees like a
racehorse again. In a normal situation,
someone with Diabetes Insipidus (Graham’s current condition – despite the name
it has nothing to do with Type 1 or Type 2 diabetes) can just drink a bunch of
water to offset the massive flow of urine, and if their doses don’t come on
time it’s no big deal. But right now,
Graham’s not in a position to get up and grab a bottle of water or even say he
wants one. So they measure the volume of
his urine output every hour, they measure his sodium, and they measure the specific gravity
(density) of his urine to determine when he is “breaking though,” or peeing
like a racehorse. They can’t just give
him too much of the drug either, because then his body won’t pee enough, he’ll
retain water, and his sodium will get too low.
That’s why they are searching for the perfect dose that can be given
every twelve hours while maintaining a health sodium level and proper specific
gravity of his urine. They do all that
so when he leaves the ICU and goes to the neuro floor and the rehab hospital,
they can give him his doses at regular intervals and he will be fine.
Now for the English portion of Graham’s
update. We spoke with his attending
physician this morning, an amazing guy who cared for Graham during our first
week here and hasn’t seen him since day 7.
He was VERY happy with Graham’s progress, and we had a good conversation
about Graham’s eyes. There is a nerve in
your head which is part of your peripheral nervous system that controls both
the muscles that dilate your pupils AND the muscles that open your eyes. These are both things that Graham is NOT
doing today, but he does seem respond to light and things crossing his presumed
line of sight when we open his eyes for him.
So his attending physician feels like Graham has most likely pinched or
otherwise damaged that nerve. If that is
the case (big if at this point), that is really great news. Why?
Because that nerve is part of your peripheral nervous system (think all
the nerves in your fingers, arms, legs, etc), not your central nervous system –
which includes the brain, spinal chord, and optic nerve. People pinch nerves in their peripheral
nervous system all the time playing football or doing other activities and they
heal JUST FINE. We get small cuts, and
nerves grow back together. This is not
typically the case with the optic nerve.
It has 1.7 million individual fibers, and when there is damage to that,
it’s a problem.
So we are very happy if this idea from
Graham’s doctor proves to be true. If it
is, then like a pinched nerve that sidelines a quarterback for a few weeks,
time could heal Graham’s nerve and therefore his eyesight. Or it make take a little bit of prompting, in
which they could actually tape Graham’s eyes open so start firing things across
that nerve and stimulate it to heal.
Either way, it leaves us very hopeful, and has us itching to try some
more “experiments” to see test the health of Graham’s optic nerve and see if it
really is just a peripheral nervous system issue.
Graham did great in his rehab today. At one point we had him sitting up on the
edge of his bed, but holding his head up tired him out very quickly. And that’s understandable, given that it’s
currently swollen up to about twice its normal size. So tired Graham started to swing his legs up onto
the bed, and his therapist read his body language which was screaming: I want
to lay back down! So she asked him,
“Graham, can you give me thumbs up if you want to lay down?” Immediately, in a motion that would have made
Billy The Kid proud, Graham pulled his hand up from his side and thrust his
thumb in the air, jiggling his hand as if to say “lay me down NOW!” It was unquestionably the fastest draw this
side of the Rio Grande in the last 200 years.
Graham is a true Texan.
In addition to that show, Graham has
resumed the rest of his normal pre-surgical tricks. When asked, he wiggles his toes, sticks his
tongue out, give thumbs up, gives two fingers; all that good stuff. But the highlight of the day came just a few
hours ago. Lindsey decided, while
holding Graham’s hand, to have a thumb war with him – a favorite Kormylo
pastime. The first time she went through
the motion “one two three four I declare a thumb war” Graham was an easy pin,
as he didn’t move his thumb at all. But
then the competitive juices in him woke up the beast! He moved his thumb side to side with the
subsequent cadence, and when Lindsey – clearly intimidated by Graham’s
superiority in the thumb war realm - surrendered by setting her thumb down on
top of their hands, Graham happily accepted the pin, and the victory. And then he did it again.
So lots of promising things from our
little fighter. He continues to get
better every day – a real testament to the best medical care in the world and
the best group of people in his corner, cheering him on and praying for him,
from all ends of the earth. Thank you so
much for you prayers and support – they really are working. And hopefully we’ll have more exciting
progress to share tomorrow.
#Prayers4Graham
Graham Update Day 23 (7/1/14) – PLEASE
SEE THE BOTTOM FOR A SPECIAL REQUEST
I realize that there are lots of things
in life I take for granted. Great
parents, an awesome wife, the ability to see and hear, a safe country, food,
clean water. I take them for granted
every day, even though from time to time I actually think about the fact that I
underappreciate them. I realize that I
should be more grateful for them than I am, and yet I am not. I think most people can relate to this.
Peeing is not something I have ever
thought about in that way. I have never
stood at the toilet and thought to myself, “I really should be more grateful
for this nice steady stream of adequately-concentrated, properly-colored,
well-timed urine.” Never once in my
life has it ever crossed my mind that THAT is a great blessing in the same way
that food, sight, and safety are. Well,
I think that way now, because every day Lindsey and I spend in the ICU we learn
more and more just how complicated peeing is.
And it continues to be a small stumbling block as Graham tries to work
his way out of the ICU.
We had an interesting morning. We learned yesterday that Graham would be
going in TODAY to get his G-tube put into his stomach so that they could
finally take the feeding tube out of his throat. They had him on the board for the first
surgery of the day at 7:30.
Then we got a call from the surgeon who
said his surgery was being moved to 12:00 or 12:30, but that it would be done
TODAY.
Then we got word that they would do an
MRI at 9:00 and his surgery at 10:00.
Then we found out that they would do his
surgery at 9:00 and his MRI right after.
Then we found out that he would not be
going into surgery at all.
Why no surgery? Urine flow!
More specifically – Graham is still having trouble managing it, and as
the medical staff has sought to get him regulated, he actually became a bit
dehydrated. That is a problem for
anesthesia – if you are dehydrated and you get medicine to knock you out, the
medicine, being absorbed by a lower volume of fluid in your body, is actually
more concentrated and becomes TOO effective.
In short, anesthesia in a 6 year-old already poses some risk, and they
didn’t want to expose him to any more risk than necessary. We are very grateful that they are so expert
in what they do and so careful with our son.
He’s definitely not just one cattle in the herd moving from gate to
gate. So we are back in a holding
pattern in the ICU. And that’s ok – he’s
still making great progress with his physical therapy, he’s alive, and sooner or
later we’ll get his pee under control.
In the meantime, Lindsey and I are very grateful for the amazing medical
staff here, and for our own nice steady streams of adequately-concentrated,
properly-colored, well-timed urine.
Here’s to hoping Graham finds his again soon!
On to progress: Graham has been moving. A LOT.
We saw some of it in his therapy – where he stood up three times today
under his own power, with just some help to balance. And a lot of his movement is coming as he
wakes up more and more. He is clearly
getting more cognizant of the fact that all these tubes, wires, stitches,
diapers, and abrasions are not as comfortable as versed and morphine made them
out to be. Couple that with the fact
that he is now off of methadone completely (and perhaps withdrawing a little
bit), and you have a six year-old with proverbial ants in his pants. That boy is ITCHY. No restraints can keep that boy from wiggling
his hips up to his hand to pull on his diaper and scratch around the edges, or
from sliding down in the bed to the point that his little fingers can scratch
that itchy head of his. It’s great to see him have such a normal reaction and
to see such skillful movements, but it does make you nervous every time he
reaches for his Foley catheter or his feeding tube.
We had a great day of thumb-wars as
well. At one point we did about 15
rounds, with Graham winning 14. He
clearly got into it. Every time we would
ask if he wanted to do it again – he gave an immediate thumbs-up. At one point he pressed REALLY hard as he
went in for the pin, and it made me giggle.
And the more I giggled, the harder he pressed! He was clearly showing his dominance, and
enjoying the fact that Mom and Dad realize just how strong he is.
Graham is also learning to use thumbs-up
for yes, and a closed fist or open palm for no.
He has shown it to PT when asked if he is tired of sitting up, and he uses it when we
ask him if he wants to play thumb-war or listen to music again. Then today we started asking him more
questions.
“Can you hear me?” Thumbs up.
“Are you sad?” Fist.
“Are you happy?” Thumbs up.
“Do you feel ok?” Thumbs up.
We are so grateful for the blessings
that Graham has received as a result of everyone’s prayers. That moment when asked if he was happy, and
seeing his thumb shoot up, relieved so much worry that we have about the pain
and suffering he is going through. His
road is hard, but he is surely being blessed to be able to bear his burden
well. For that, we thank all of you and
a loving Heavenly Father.
Lindsey and I both see the silver-lining
in this tragedy. We are becoming better
people. Our little family is becoming
stronger. Graham will have an amazing
story to tell. We hear of lots of lives
that Graham is touching. And Graham has
shown us that the world is full of kind and wonderful people. The world is good. We see that.
One thing we worry about, though, is
that with time it will be difficult for even a boy as amazing as Graham to see
that silver lining. Lindsey and I keep a
journal in hopes that he can draw strength and understanding from it as he
grows up, but there is one thing we would ask of all of you, and it’s this:
If Graham (NOT LINDSEY, MICAH, BRODE,
ROCCO, or ANYONE ELSE) or his experience has touched your life in any positive
way during the last 3 weeks, or if he does at some time in the future, please
let Graham know. Send Graham an email to
prayers4graham@gmail.com , and let him know if he has touched you or someone
you know. Maybe you pray more because of
him, and it feels good. Maybe he
inspired you to run a race or be more kind or have more faith. Maybe you thought of a funny joke that you
think he will like. If he has helped or
inspired you in any way, please just take a minute sometime in the coming weeks
and let him know. We won’t open any of
these emails until Graham is out of the hospital, and/or until he seems like he
needs an emotional pick-me-up. So don’t
worry about sounding lame or cheesy. You
can send a line or a novel. Just email a
note to an awesome 6 year-old.
Thanks in advance if you are able to
take the time to do this, and thank you as always for your prayers. They are working, so please keep them coming!
#Prayers4Graham
Graham Update Day 24 (7/2/14)
Good things happen with Graham when
Lindsey is in the building. Graham’s
first words. Graham’s first thumb-war. Graham’s first snuggle.
Today we had some more firsts.
It all started in physical therapy. We got Graham on a bench again to practice
standing up. He again did an amazing job
of standing up using his own strength.
Big things happened, though, when his physical therapist at one point
asked him if he was ready to sit down:
Graham pushed everyone’s hands away, and slowly sat down under his own
balance and power. It was amazing body control for a 6 year-old who
just had brain surgery four days ago. I
never could have imagined that he would progress so quickly. What a fighter!
Emboldened by Graham’s progress, his
physical therapist felt that Graham could handle some more – his balance and
strength passed the standing and sitting tests with flying colors. So we decided to take a big step forward and see
if Graham could walk. Lindsey held a
hand, Graham’s physical therapist positioned herself behind Graham with her
arms under Graham’s armpits (just in case), and his amazing nurse held all his
tubes and wires. We asked Graham if he
could walk towards the bed – and our little fighter picked up his little foot,
thrust it forward a couple inches, and put it back down. It was Graham’s first step. Then he inched his other foot forward. And then, as Graham hung his head apparently
to rest his tired neck, ran into an obstacle.
Graham has a Foley catheter in so that
they can carefully measure his urine.
There is a clear tube that runs out of his little diaper and into a
small bag that hangs in the side of the bed.
After taking two tiny baby steps, that hose was resting on the ground
adjacent to his left foot – about four inches in front and to the left. The tube wasn’t resting on any part of
Graham’s body, so he really had no way of feeling its presence or
position. As Graham faced due north and
gathered himself after taking his second baby step forward, he lifted his left
leg for step number three. Only this was
not going to be any normal baby step, and he was not going forward. Graham lifted his left leg high into the air,
and instead of moving it due north in the same direction of his previously
shuffle, he thrust it northwest at a 45 degree angle, stepping cleanly over his
catheter hose. There was immediate
confusion in the room – how on earth did Graham manage to step so purposefully
and cleanly over the tube? And then we
noticed his eyes: his right eye was
still swollen shut, as it has been every day since brain surgery. But his left eyelid, for the first time in 24
days, was cracked open on Graham’s own accord, and blinking occasionally. How did Graham step over the tube so
cleanly? Easy – he saw it and stepped
over, just like any of us would. Graham,
the 6 year-old whose head was run over by the front tire of an SUV and who pulled
himself out to safety, can walk, talk, and see.
All just four days removed from brain surgery. His apparent vision was later confirmed from
a resting position in his bed when Lindsey stood away from Graham in another
part of the room, his nurse asked Graham to point to his mom, and he extended
his long arm and tiny finger exactly in his mama’s direction.
24 days ago Graham was in an accident
that many people thought would kill him.
But immediately prayers and the priesthood went into action. Before Lindsey and I could realize it, people
of diverse faiths, backgrounds, and nationalities were praying for Graham. 4 days ago Graham had brain surgery. 2 days ago friends, family, and our
congregation at church joined us in a fast for Graham’s sight to be
restored. And today, after three and a
half weeks in the ICU – Graham opened his eye for the first time and saw. It is an absolute miracle. Thank you all so much for pleading with God on
Graham’s behalf. Lindsey and I are
absolutely filled with joy, and we owe it to an amazing medical staff and the
faith of friends, family, and wonderful people we’ve never even met. Prayer is real and powerful. God loves us all. The world is good.
#Prayers4Graham
Graham Update Day 25 (7/3/14)
Riding the high of yesterday’s amazing
milestone (our boy can see!), Graham didn’t let up on bit and continued to
‘wow’ us through the remainder of last night and today.
Graham was very alert last night, which
right now is bitter-sweet: We love that
he is awake and active and can show us his personality. And it was awesome to hold up one, two, or
three fingers and have Graham replicate the gesture ON SIGHT correctly EVERY
TIME. But it’s hard to watch him “kick”
his old habits – after more than three weeks on methadone, morphine, and other
opiates, Graham seems to be withdrawing just a bit. Nothing too serious – the medical staff did a
great job of weaning him off the sauce.
But he does seem to itch pretty much constantly, and I can only imagine
how frustrating that must be. It is
scary to watch too – until late this morning he still had his catheter in, and
when Graham would head down for those manly itches – we could only hold our
breath and hope he didn’t do to his catheter what he’s done to his feeding tube
four times: pull it out.
Thankfully THAT never happened, although
Graham did pull his feeding tube out again this morning. It turned out to be a bit of a blessing in
disguise – Speech therapy used his time sans-tube to work on eating. We asked Graham if he wanted apple sauce –
that was a negative. And no surprise –
the boy has never liked it! Then we
asked him to give 1 finger for vanilla pudding and 2 fingers for chocolate. He wanted vanilla. So over the next ten minutes, Graham felt
cool water in the back of this throat for the first time in almost a month, and
downed about a tablespoon of delicious vanilla pudding. His and our favorite
nurse is off today, but actually called just a few minutes ago to check up on
Graham and even she was blown away that (a) they let him eat, and (b) he did so
well. We were surprised too – we have
expected all along that Graham would make a remarkable recovery, but we
honestly never thought it would happen as fast as it has over the last 48
hours. Setbacks are expected, and
progress is expected to wax and wane.
But Graham has been such a consistent little fighter that his progress
has almost never slowed – each and every day since the accident has brought
with it great progress. What an amazing
little boy.
He wasn’t done with a little bottled
water and a few bites of pudding. When
occupational therapy was in, they had him sit up on the edge of the bed wash
his face with a washcloth. It was a good
show of multitasking by Graham as he worked his core and cleaned up at the same
time. When he was done, his therapists
both gave him fist bumps. Not wanting to
be left out, I asked for a fist bump as well.
Graham and I bumped knuckles, and then he hit my fist again, and then
playfully brought both of his fists up like he was going to fight. This is something we see all the time in our
house – there is always tons of wrestling and play-fighting. But to see him act so playful was a real
treat for us and for the whole medical staff, who had just happened to gather
outside his room for rounds in time to witness the exchange. I have never seen so many smiles in an ICU as
I saw on the faces of all those wonderful doctors and nurses who have worked so
hard to save Graham’s life and nurse him back to health.
Physical therapy was great was
well. Graham spent about thirty minutes
sitting up, standing up, and walking. He
held his swollen little head up high the entire time – much different than the
last two days when he frequently had to rest his little chin on his chest. He walked between his bed and the couch and
had a wonderful pit-stop on the couch, where he sat up and chilled right
between Lindsey and me. It felt so good
to just sit there with our little guy – he is so strong and his personality is
coming out so much. While he was sitting
there we asked him to show us his guns, which he did by extending two fingers
on each fist and holding them up in the air like Wyatt Earp himself. Then we asked Graham to show us his “pipes,”
i.e. flex his muscles. He happily held
his arms up and bore us his biceps, his arms quivering just a bit as he exerted
himself to show off maximum mass and definition. Not only is Graham walking, talking
occasionally, eating, and seeing more like a normal little boy again, but he is
doing many of the things that make him our Graham Hopper. We know he never left, but still, it’s great
to have him back.
The doctors have nearly dialed in his
DDAVP (urine regulation drug), and he is supposed to get his G-tube on
Monday. Every day we get just a little
bit closer to leaving the ICU, which will actually be bittersweet. The doctors and nurses here in the ICU saved
our son’s life, they shown so much love and care for Graham, and it has
literally been home away from home for the last 25 days. So we are grateful for Graham’s progress, but
we will be sad to leave these amazing people when the time comes. They, with their care and expertise, combined
with the faith and prayers of so many friends, family members, and wonderful
people all over have carried our family and willed Graham back to health. We are so grateful for everyone who helps our
family and prays for our son. And even
though he had made miraculous progress in the last 25 days, he still has a long
way to go. To that end, please keep
praying for Graham and his continued recovery.
We will do the same!
#Prayers4Graham
Graham Update Day 26 (July 4, 2014)
This will definitely be an independence
day to remember. As we celebrate the
courage of our founding fathers, and honor all those who have died and risked
their lives to protect our freedom, Graham gained a lot of freedoms and
independence for himself today.
The first came in physical therapy. It was timed perfectly – Brode and Rocco came
to see Graham for the first time since his surgery. Graham was so excited to SEE both of his bros
for the first time since his accident, and was eager to work hard for them. He got the biggest smile on his face as Brode
and Rocco told him stories, acted silly, and even got up into Graham’s bed and
laid down next to him for a photo op.
Brode spent the entire afternoon with Graham – reading him books,
telling him stories, and even watching part of a movie with his brother. It makes us so happy to see the best buds in
the world playing together again. Brode
was so encouraging as Graham walked out of his room for the first time and
clear down the hall. The medical staff,
many of whom had not seen Graham walk, cheered him on and watched in awe as
Graham powered down the hall. Graham was
actually uncharacteristically appreciative of the applause, stopping on command
to show off his guns (finger pistols) and his pipes (bulging biceps). He even managed to “force” the occasional foe
– Jedi Style. Brode kept telling Graham
“you look so good! Graham you are
AMAZING! Graham you are a TRUE
SUPERHERO!” Absolutely heart-warming to
see, and great for Graham to gain “freedom” from the confines of his ICU room.
Only it doesn’t stop there. We had a good conversation with Graham’s
doctor this morning, and he let us know that even though “we’re kind of getting
used to you guys” and “we’ll be sad to see you go,” Graham would be leaving the
ICU today! Bittersweet for sure – sad to
leave such an amazing team of people who saved Graham’s life and cared for him
so greatly. But awesome that our little
fighter is moving on!
So shortly after two o’clock we move to
the neuro floor. In terms of “amenities”
and convenience it will actually be a step up, which makes leaving the ICU
behind much easier. We can now bring
Graham’s baby sister into his room, which means Graham will be able to see his
sister for the first time since his accident and brain surgery. He also has a bathroom IN his room, which
means Dad doesn’t have to leave him anymore and share ONE shower with every
parent on the ICU floor. Graham can also
take a shower, although we’re not quite sure how that will work logistically
just yet. Finally, we can also eat in Graham’s room, which is something else
that will enable us to spend even more time with him, as opposed to eating all
of our meals outside the ICU in the family waiting area.
Graham’s day-to-day life will be
different as well. In the ICU the nurses
check on him at least hourly, which means he gets “bugged” a lot, for lack of a
better word. On the neuro floor his
nurse is stationed right outside his room door, but only performs medical
evaluations every four hours, which means he will get much better rest. Graham is no longer anchored to his room
either. He has a little wheelchair, and
we are free to move about the hospital. We can see the train room, the art
room, the Ryan Seacrest recording studio, the Troy Aikman football memorabilia
room, various playrooms, the library, and go to the gym (with physical and
occupational therapy). All we have to do
is tell his nurse, and we are free to roam.
Seeing how happy it made Graham to walk outside his room and scoot
around a bit on his wheelchair in the ICU gives us just a glimpse of how fun it
will be for Graham to continue to get better in this amazing place.
We are seeing more and more of “Graham”
with each hour that passes. Just a
little bit ago, while he was watching a movie with Brode, Lindsey referred to
Graham as a “fighter.” He got a HUGE
smile on his face. I held up my fists in
a playful fashion, and his dampening smile came back quickly in full
force. Graham put up his dukes, and was
ready to go. I was, of course, more than
willing to offer up my head for a punching bag, and Graham proceeded to
playfully pound on the top of my skull with a tremendous 16-punch combination,
alternating lefts and rights with all the speed and agility of a trained
boxer. Graham is back, and freedom is
written all over the huge smile on his face.
We love Graham so much. We have prayed and fasted for him, as have
many friends, family and wonderful people all over the world, to whom we owe a
debt of gratitude. His life and recovery
have been a string of miracles, made possible only by an unbelievable ICU and a
loving Heavenly Father who saw fit to answer the prayers of so many. Graham
still has a lot of hard work and rehab left so we ask for your continued
prayers. But please also take minute to
rejoice with us and give thanks for his amazing recovery thus far.
#Prayrers4Graham
Graham Update Day 27 (7/5/14)
Today was a very quiet day for Graham in
terms of treatment and physical therapy.
His urine flow and sodium continue to be right where his doctors want
them to be, he’s off all pain medication and seems to be done withdrawing. He had the day off from physical therapy,
occupational therapy, and speech therapy, although all three will resume hard
and fast again tomorrow as they try to ramp up and get Graham ready for Baylor
Children’s House for his inpatient rehab stay.
For the first time since saying “mama”
several times the day after he came off his ventilator, Graham has started to
purposefully speak again, at least a little bit. And that’s amazing considering he still has a
tube down his throat. The first occurred
when we were talking with Graham about dinosaurs while reading him a dinosaur
book. I said something to the effect of
“you know all about dinosaurs, right Graham?”
And he responded with a very throaty “right.” We repeated that exchange a few more times as
we discussed Dinosaurs and Star Wars.
Eventually we came to the topic of food.
I asked him if he wanted some vanilla pudding, which he’d had two days
prior. I kept asking him to give me
various hand and arm gestures to make sure that’s what he wanted, and
eventually he just got tired of my thick skull and gave a throaty “I want
it.”
We know that more speech will come with
time – Graham’s mind and understanding are ALL THERE. But there are certain times when speech is
not even necessary. Often times we will
ask Graham if he wants something, and before we can come up with a way for him
to say yes or no, he is smiling ear to ear.
One such time came this morning.
The ICU made things a little bit
complicated because they limit both the number of visits (4 only) and age of
visitors (3 and up). Totally
understandable for an intensive care unit.
But it is nice to be done with those restrictions, because Graham got a
very special visitor for the first time since his accident – his baby
sister! When we asked if he wanted to
hold her, there was no need for thumbs up or folded arms or fist bumps to say
yes. Just that huge Graham smile. It was so sweet to see big brother hold his
two month-old sister again. And it was
great to be together as a family again – it was the first time in 27 days that
we were all in the same room together.
The swelling continues to go down in
Graham’s face, and he looks more and more like himself every day. Today he looked especially good, and towards
the end of the day we got a wonderful treat – Graham has started, ever so
slightly, to crack open his RIGHT eye.
Just yesterday we had a conversation with his physical therapist about
how being blind in one eye could affect rehab.
She said that one of the best therapies for losing sight in your
dominant eye is golf. Immediately I had
visions of LOTS and LOTS of “therapy” with my son over the next year or
forty. But who knows what the future
holds? Graham opening his right eye is a
great sign, and golf therapy might never be prescribed. The only thing we know for sure is this –
Graham has and will continue to amaze us with his fighting spirit and
ever-optimistic smile. We are so blessed
to have such a wonderful son, and to have so many people who love and care
enough to pray for and support him.
Thank you all for everything you do, and keep please keep praying for
Graham.
#Prayers4Graham
Graham Update Day 28 (7/6/14)
Short update tonight, but we should have a lot
to share tomorrow but in terms of Graham's progress and where he is headed in
the coming days and weeks. But here are some of the highlights from today, with
more details on each of these tomorrow:
*Graham took his first road-trip to the train
station today.
*Threw bean bags at Dad - 100% accurate.
*Picked up colored objects on command with
Mom. 100% accurate.
*Had a light saber fight with his brothers.
*Played with dinosaurs that his friends from
school brought him 3 weeks ago.
*Struggled with his feeding tube. Can't wait
to get that thing out!
*Watched Frozen.
*Wrestled with Dad's head by pinning Dad's
head down - first with his arms, then with his legs. That boy is Strong!
*Opened both of his eyes even more.
Graham is a fighter! Thank you all for your
prayers and support. It is awesome to share in the miracles of Graham's
recovery with so many. Lindsey and I really hope you all understand how much
you increase our faith and lighten our load. Thank you!
Graham Update Day 29 (7/7/14)
(Quick request for Boise Friends and
Family – If you attend the Prayers4Graham night at Chile’s on Broadway tomorrow
starting at 4:00 pm, – please take some selfies and send them to Graham at Prayers4Graham@gmail.com . Put
“Chile’s” in the subject line and we will open them and read them to Graham and
show him any pictures your send.
Thanks!)
Graham’s recovery has been nothing short
of miraculous. His brain surgeon this
morning said “He’s doing better than I ever thought he would.” That is a lot for a man who, while warm and
caring, goes light on superlatives and rarely refers to anything as good or
bad. The last time I heard him say
something like that was one he was describing the success of Graham’s brain
surgery (“I think it looks GREAT!”). So
for him to say THAT reaffirms what we know – Graham is a fighter who is being
blessed beyond comprehension by an amazing medical staff and a loving God who
answers the prayers of so many. Yet even
a fighter like Graham is not immune to setbacks.
Yesterday started off as a great day for
Graham in terms of his therapies. It
freed him up to leave his room recreationally for the first time. We went down to the trains and he loved
it. He gave us directions by pointing
all over the place as we pushed him from train to train to see the different
figures they carried. He saw Star Wars,
Hulk, Ninja Turtles, and was particularly captivated by one train with a rather
large tiger on it. His therapy also went
very well – He can see all different colors, throw with either hand, and play
with his toy dinosaurs.
The highlight of the day was without
question a visit from his Grandma and Graham’s whole family. He got to play lightsabers with his brothers
and karate with Dad. He also got to hold
his baby sister again, which he absolutely loved. Everything was going just fine – until he
pulled his feeding tube out again, at least partially (4 inches).
Graham had done that several times in
the past week or so, and they had always been able to reinsert the tube without
too much difficulty. Last night was the first time, though, that he had done it
since being REALLY awake and alert, and you can only imagine that a feeding
tube is a much easier pill to swallow when you are asleep than it is when you
are awake. His nurse told Graham she had
to put it back down, and little Graham, not 10 minutes removed from swinging a
lightsaber around and smiling ear to ear, obediently obliged. She tried to coax Graham into relaxing his
throat or swallowing it down, but there is only so much that 6 years of a
world-class gag reflex will tolerate.
The tube curled, bunched, and pinched in the back of Graham’s throat,
but it did not go down, and he was left dry-heaving.
At that point his nurse let out the
slack in the thin plastic tube, regrouped, and asked for Graham to try
again. This time a very frightened 6
year-old did the only thing he knew how – he clenched his teeth and fought off
the alien experiments. She pleaded for a
minute or more, but Graham wouldn’t budge, and there was no smile to be
found. Finally, I asked Graham if he
could give it one more try for me, and like the amazing boy that he is, he sat
up, faced his fears, and opened his mouth again. But again, as he obediently held his mouth
open in spite of the gags, he was left with a tube curled up in the back of his
throat, not one inch closer to where it needed to be. They called in for an x-ray to see if the
placement would suffice, and it would not.
This was a problem - Graham had not eaten anything by himself since the
last time his tube was out, and he wasn’t about to start now with that thing in
there. And I don’t blame him – I
wouldn’t be swallowing anything with that in the back my throat either. So we rolled the dice with his feeds and
sodium, put Graham on an IV drip, and pulled the tube out for the night.
Graham was certainly happy with the
result. No sooner did it come out than
he grew a huge smile on his face and started whispering “mama” again to Lindsey,
and even talked in his sleep. Graham had
moved between feeds and IV fluids before though, and the result was always
trouble for the endocrine team.
Controlling his sodium and DDAVP (pituitary drug to control urineflow)
was our ticket out of the ICU. Losing
control could be his ticket back in.
This small setback – pulling out his feeding tube – could grow into
something bigger.
As morning came, our fears were
confirmed. Graham’s sodium had
spiked. Too out of control, and it would
require only the acute level of care that the ICU could provide. Fortunately for us though, his body reacted
in a very normal way to a different IV fluid that they tried after his first
lab result came back, and things quickly came back in line. But a healing boy with rehab cannot thrive on
IV fluids alone. So what were the
options?
First, there was the status quo – sedate
Graham a bit, get his feeding tube back in, keep his hands in mittens, and see
if he could gradually work up to eating over the tube. If he could, then we would pull the tube out
of his mouth and he would eat on his own like normal. If he couldn’t, then he would have the
surgery that they had been talking about for weeks – the G Tube – and he would
feed that way and resume his therapy.
Lindsey and I were not keen on this though. That would mean AT LEAST 3 more days of that
thing in his throat. More and more the
feeding tube feels less like medicine and more like torture. Everything that Graham has endured did not
solicit so much as a whimper from Graham, but trying to reinsert that tube last
night made him cry. No, we were not
going for that approach. We would not
lay down and accept 3 more days of hell for Graham. We always defer 100% to the wisdom and
judgment of the medical staff, but last night we decided we would argue hard
for an alternative to putting the feeding tube back down his throat.
What Lindsey and I thought would be the
best approach would be to get the surgery scheduled ASAP. Once “on the board, “ keep the feeding tube
out, and work with speech therapy to determine if Graham could eat safely and
eat enough to sustain himself. Then try
up until the surgery to get Graham to eat enough on his own – 1400 calories a
day, plus at least 12 ounces of water.
If he could do it – then we would cancel the surgery. If not, then he would get a second “belly
button.”
This morning Dr. Braga and the neuro
team sided with us, Lindsey and I were relieved, and Graham’s smile seemed
stuck on his face the entire day. Speech
therapy came and for the first time in a few days, Graham ate. A little yoghurt. Some sips of water. And a lot of PediaSure (a meal replacement
about the consistency of thick chocolate milk, but vanilla flavored, and full
of nutrients). His speech therapist was
shocked at how well Graham could eat. Her
reaction bordered on disbelief. Her eyes
were big and her smile was bigger. She
cleared Graham to eat with our supervision alone, and so it was time to get to
work. Graham ate slowly at first –
holding sips of his “smoothie” in his mouth for 10-20 seconds at a time before
swallowing. But eventually Graham
powered through – eating exactly ½ of his daily requirement over the next six
hours, PLUS a vanilla milkshake. In
other words, he cleared the bar easily on his first attempt. Graham is eating like a champ, and after all
the fuss, postponed, and cancelled surgeries, it turns out that our little
fighter may have bobbed and weaved his way out of the surgery altogether.
So the rest of today was really
bliss. Therapy went well – he stood up
and threw balls at us (with help to balance) and kicked beachballs as well. He
walked more than he has at any point since his surgery, and has the strength to
sit himself up in bed. He is also talking
a lot more. At one point I spilled some PediaSure
on his chin while holding his cup and straw in place. I told Graham “Just say ‘ you’re a sucker
dog, Dad!’” He popped a huge smile and
said it word for word, almost in a whisper.
You’ll need to ask my dad what a sucker dog is, because I don’t really
know. But it is now widely used by a
third generation of Kormylo boys, and it was a delight to hear Graham say it
today.
For the past 28 days Graham has had five
leads stuck to his chest and another to his finger to monitor his heart rate, breathing,
and oxygen level. Those have now gone
the way of the feeding tube as well, much to Graham’s delight. So with only an IV in his arm, and without a
surgery anywhere on the horizon, Graham is just eating, smiling, and ramping up
his rehab. Next stop? Baylor Children’s House (inpatient
rehab). ETA? Possibly the end of the week. God is good.
#Prayers4Graham
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