Another Brain Surgery

Graham Update Day 53 (7/31/14)

Late yesterday we were alerted that Neurosurgery here at Cook Children's had reviewed Graham's MRI and CT scans and wanted to speak to us about him.  Graham's neurologist told us this morning that Graham would "most likely need another surgery," but that neurosurgery would need to be the ones to talk to us as soon as they could get over, which happened at about 6:00 pm this evening.

It was a tough wait.  With everything that Graham has been through, another highly invasive brain surgery just seems like to much.  How many times does he have to get his skull torn apart? The thought of Graham going through that AGAIN, only this time more alert and aware, really weighs heavy on my heart.  How do would we explain these things to our now cognizant son?  It would be another mountain to climb, for sure.  Lindsey definitely put it best though - this is just another opportunity shore things up in his skull and set him up for success throughout his future.  She is such a strong and amazing woman and I feel so lucky to be married to her. 

Dr. Honeycutt here at Cook Children's is the neurosurgeon that we spoke with.  He said there are two things that need some attention: one very minor, and one very significant.  The minor issue is that Graham does not currently have a roof on his right orbital, which means the brain can, and is, sagging into that region of his head.  He said it doesn't pose any discernable risk, and fixing it only slightly increases his chances of regaining vision IF his optic nerve is the cause his right-eye blindness.  In other words, if this were the only issue, it wouldn't be worth operating on.  But it's not the only issue.

The real problem is Graham's sphenoid sinus, which I will do my best to identify in Graham's CT scan from Tuesday, here below:

The short of it is this - the impact of Graham's accident was so severe that it broke the base of his skull and despite attempts to seal the bottom portions of the dura (membrane around the brain), cerebrospinal fluid (CSF) is leaking into that "dirty" sphenoid sinus cavity.  And since fluid can get into that sinus, it means that the bacteria that lives therein has an open door back to the brain, putting Graham at risk for meningitis.  Untreated, Graham would essentially be playing a game of Russian Roulette with a deadly disease, every single day for the rest of his life.

Dr. Honeycutt here recommends performing a surgery next week, and he recommends it be performed by Dr. Braga - the man who performed Graham's first surgery.  He said that a plate will need to be placed over the sinus, and it will need to be sealed with tissue from inside the skull, similar to how they covered up Graham's frontal sinus in the first surgery.  If for some reason Dr. Braga can't do the surgery at Children's Medical Center, then Dr. Honeycutt will do it here at Cook Children's.

I asked Dr. Honeycutt how many times he had performed a surgery like this.  He said only a handful - rarely if ever does a patient actually receive an impact so strong that it fractures THE BASE of the skull.  The rarity of it sounds daunting, and it is, but then Graham's first surgery - reconstructing a forehead that had been sheered out of place in one piece - was a first for his brain surgeon and plastic surgeon then as well. 

I know Graham can overcome this.  He is the most amazing fighter I have ever met in my life.  But it pains me SO MUCH to think that he has to go through this.  Brain surgery coming out of a coma is one thing.  Brain surgery when you ate pizza, built Legos, and watched a movie the night before is another.  I often wonder if I have enough faith to merit the miracle Graham needs.  I wondered it often while listening to the beeping ICU monitors late at night in the days following Graham's accident.  It seems like a long time ago, but I remember being comforted then by the thought that even if my prayers and faith were not enough, the prayers and faith of so many others would be.  I lean heavy on that comfort now.  Thank you for praying for my son.  It gives me confidence that he really is in God's hands, and that Graham's burden will be made light by our loving Heavenly Father.

MRI Results, Optic Nerve, Another Brain Surgery?

Graham Update Day 52 (7/30/14)

This morning just before Graham went to his first therapy session, Graham's neurologist here at Cook Children's (who has been amazing!) pulled me out of the room to discuss Graham's MRI results.  He let me know that he couldn't say a lot about the optic nerve until radiology compared it to his CT scan (which would come a little later in the morning) but that he could discuss the rest of Graham's injuries with me immediately...

The first thing that he did was confirm that Graham had a very small mid-brain injury consistent with what his ophthalmologist had observed clinically last night.  It didn't seem to concern his neurologist that much, and seemed to share the sentiment that the pupillary activity in Graham's left eye would get better with time.

His mood got a lot more somber as he discussed the rest of Graham's injuries.  The first thing showed and described was severe damage to both sides of Graham's frontal cortex.  Damage here typically affects personally and short term memory, that latter of which has been a problem with Graham thus far.  His biggest concern is that "if Graham doesn't have a short term memory, it will be impossible for him to learn."  He said that his injuries also explained Graham's minuscule attention span.

He also showed me that Graham's frontal lobe had severe damage as well.  He said this would also affect his personality, especially lowering his inhibitions and raising his impulsiveness.  We have observed this in Graham.  One Graham-ism from before the accident is that he is DEATHLY afraid of heights - to the point that I cannot even pick him up to give him a hug; I have to bend down to hug him so he can keep two feet on the ground. So far since the accident, Graham has been fearful of NOTHING.  I am free to pick him up and he actually enjoys the ride- a clear sign that his inhibitions have been affected.

These are all things that we have known, and have been praying would improve, but I would be lying if I said I wasn't shaken up by my conversation with the neurologist.  It's one thing to see changes in behavior, but it's another to see the damage on screen.  It was a very tough pill to swallow, and drove me immediately to prayer.

Graham would eventually have his CT scan, and as we have seen time and time again with our little fighter, the witness always comes after the trial of our faith.  His physical therapist came to tell me after their session that it was his best yet.  14 out of 15 times he was able to bend down and pick up an object with no balance assistance. He is walking so well now that we are no longer required to hold onto his gate-belt when he walks, we can just hold his hand.  And when Graham told me all about his physical therapy session, I grabbed him and picked him up to give him a hug - and he freaked out just a bit.  He was scared of heights again.  Inhibitions?  Coming back!

Immediately after my conversation with Graham's neurologist, I said a prayer and did the first thing that came to my mind - I decided I was going to work diligently on challenging Graham's short term memory.  I told him just before 9 am that I needed him to remember three words - ball, lion, carrot.  We went over them a few times, and then Graham said he would remember them.  And he did.  He came back from gym - ball, lion, carrot.  After the CT scan?  Ball, lion, carrot.  After a nap?  Ball, lion, carrot.  After art class?  Ball.  Lion.  Carrot.  And yes, one of his many nick-names has caught on here.  See his art below.

When his neurologist came back to review the CT scan and saw Graham's trick he was very pleasantly surprised.  He said "well he clearly has a short-term memory.  Now we just need to work on that attention span," and proceeded to review the CT scan.  The findings?  Graham's optic nerves are both in tact.  There is pressure on the optic nerve going into his right eye due to some damage to the surrounding tissue, and we cannot be sure at this point that he will be able to see again.  But we are sure that his optic nerve is not severed, an injury that WOULD rule out vision in his right eye.  It is a huge blessing and a miracle.

His doctor did see some things that gave him pause and moved him to contact neurosurgery.  Graham had extensive fractures INSIDE the base of his skull during his accident. There is one area that showed up today where his brain his basically pressing into Graham's right orbital and onto his optic nerve.  It is really close to the back of his eye.  I think that what they are seeing is an area that Dr. Braga repaired by sewing a tissue-flap onto the base of his skull, but neurosurgery came by briefly today and said they were reviewing all of Graham's records and would some sort of an action plan (or inaction plan) tomorrow.  But as of right now, there is a possibility of more brain surgery to relieve pressure on the optic nerve and/or to shore up the base of the skull above the right orbital.

Today was an emotional roller coaster.  It started with a sobering MRI report, but by the end of the day Graham was thumbing his nose at it.  So really nothing has changed, except yet again Graham is doing better than the day before.  Graham continues to defy the odds and overcome his "severe brain damage" to recover more and more every single day.  He amazes me.  And I'm amazed every day by everyone who prays for Graham, even after nearly two months.  Thank you because prayer is real, it is powerful, and in Graham's case - it is clearly working.

MRI, and about those eyes....

Graham update Day 51 (July 29, 2014)

One thing we learned pretty early on following Graham's accident wherein a car ran over his head is that schedules are very fluid and ever changing in the hospital.  So it came as no surprise today that Graham's MRI, first scheduled for 8:00 AM, got pushed back to noon and didn't get started until well after 1:00  Graham has not seen anything out of his right eye since the accident, and his left pupil is fixed, so we were naturally VERY anxious to  get the results back.

Getting an MRI is not without its hurdles though.  During an MRI as detailed as Graham's, where they are looking at the brain in whole, and looking closely at the pituitary gland and the orbitals, one would have to lie motionless for 30-40 minutes.  This is normally a tough thing for adults to do, let alone a 6 year-old who, since his injury, gets distracted VERY easily.  The natural thing to do is sedate the child, but doing that requires fasting - not an easy thing for someone with diabetes insipidus to do.  That level of sedation required also requires a ventilator.

They actually wanted to do the MRI last Friday, but due to some issues with Graham's sodium (D.I. related) they pushed it back to today.  With lots of careful planning and D.I. management, the MRI did happen though, with Graham falling asleep with a smile on his face at 1:30 PM, and rolling back into his room, groggy but alert, at 4:00.

The results:  we don't have them yet.  For starters, the imaging took place late in the day, and when it takes a pair of neuro-radiologists to interpret them, that time window just won't do.  The other hang-up - they want to compare the results of the MRI to the results of a CT scan ( now scheduled tomorrow morning at 8:00), before they make any declarations about his injuries, but the good news is that as long as the CT scan happens, we should know a lot more about Graham's injuries tomorrow.

Therapy continues to go very well for Graham.  The name of the game is getting him to the point where it is safe for him to come home, and to that end they are working on getting up from a sitting position and then sitting back down again safely.  He can walk under his own balance and power still, although he is pretty wobbly so they don't think it is safe for him to do so just yet.

Graham will meet regularly with a Neuro Psychologist here at Cook Children's.  She met with him for the first time yesterday and just played with him. She brought a little sandbox and some fake dinosaur bones.  They played for a little while, and then Graham said "is it ok if my dad plays with us?"  Definitely music to my ears!  First I had Graham close his eyes and I buried the pieces, and then he opened his eye and dug for the bones.  We did this a couple times until it was my turn to be the paleontologist.  I closed my eyes, and while they were closed I touched a the foot of a white stuffed horse that was in Graham's bed.  Graham apparently saw this, and doing so completely threw Graham off - he picked up the horse, looked at it, and  eventually started talking about something else - completely forgetting that I had my eyes closed and was waiting for him to bury the bones.

After the session, I asked the Neuro Psychologist what her impressions were.  She said Graham was very complacent, which is not a bad thing.  He's just open to suggestion and is basically willing to do whatever.  She also said he wasn't the least bit agitated, which means he is coping well.  Then she said "he is really distracted.  I mean REALLY distracted.  We are in a pretty calm and controlled environment, and you saw how hard it was for him to stay focused.  Imagine if he was out with lots of people in a completely uncontrolled environment.  That wouldn't be safe for him yet." 

* * * * *

This picture here below is a 3D-rendering of Graham's CT scan taken the night of his accident.  You can see that his forehead was completely broken off across the orbital bones and the bridge of his nose, and that his entire forehead was shifted towards the left side of his face.  In doing that, you can also see that his upper-right orbital bone was actually pressing on the upper right portion of his right eye.  Shortly after the accident occurred, an ophthalmologist at Children's examined Graham and determined that the pressure in his eyes was OK, and that there was nothing that could be done immediately to help Graham's vision.  That was the last time that anyone took a close look at Graham's eyes - until today.

We were very fortunate to get a late visit from an ophthalmologist this evening.  He spent a good 15 minutes with Graham, doing a variety of tests, and this is what he found:

• Graham's left eye was his "bad eye" before the accident.  Graham has amblyopia, a type of lazy eye.  It means he didn't really use his left eye at all, although he had no issues with it wandering off like some with a "lazy eye" do.  When Graham's doctor examined his left eye today, he found that Graham had 20/100 vision in it - better than before his injury, and a HUGE blessing.  That pupil is still not dilating, and we were relieved to hear the doctor's explanation - he said it was most likely due to a mid-brain injury.  He sees it a lot, and expects that with time Graham's left eye will function normally.  This is GREAT news!
• Graham's right eye is another story.  He doesn't open it much at all, and tonight we confirmed he cannot see anything out of it.  The inability of Graham to move his right eye or open it is caused by damage to the third cranial nerve.  This is something that is inoperable, but that could potentially heal with time.
• The second cranial nerve could be the source of the actual blindness in Graham's right eye, and is what we hope to better understand with tomorrow's MRI results.  Depending on the severity of any potential damage to that nerve, it is something that could heal over time, or it could be permanent.
• There is, however, another issue that could be causing the blindness in Graham's right eye - Terson Syndrome.  In instances where people have high Intracranial Pressure (ICP), like when your head gets run over by an SUV, people can hemorrhage inside their eyeball, and the resulting blood can actually obscure all the light from hitting the back of the eye and flowing into the optic nerve.  Graham's doctor could VERY CLEARLY see Terson Syndrome in Graham.

So what does this all mean?  Graham's left eye will be fine, and get will likely get back to normal with time.  Graham's right eye is another story.  IF his optic nerve is undamaged, then his blindness is almost surely due Terson Syndrome, something that can be corrected surgically - you cut the eye open and scrape out the old blood.  This is our best-case scenario at this point.  Next best would be that a combination of optic nerve damage and Terson's are causing it, and the former will heal with time, while the latter will be repaired surgically.  If Graham's optic nerve is completely and permanently destroyed, though, the Terson Syndrome would be a moot point, and Graham and Dad would just need to go golfing a lot a together to help him adjust to having a new "dominant" eye.

So we are very hopeful that the MRI results are promising tomorrow both in terms of his vision and the overall health of his brain.  Any way you slice it though, it is a miracle that Graham is alive.  It is a miracle that he can walk, and talk, and see - even if it is out of one eye.  We are so grateful to the medical team - from the first responders to the staff at Children's to the amazing people here at Cook - for helping Graham get to where he is at today.  And we are grateful to our Heavenly Father for answering our prayers and the prayers of so many others on behalf of our sweet little Graham Hopper.  Thank you all for your prayers, and God Bless.

Vision Problems and Santa Claus

Graham Update Day 47 (7/25/14)

A major concern that we've had since Graham's accident has been his vision.  On day 1 they told us there was a very great possibility that Graham would lose his vision completely as a result of the accident. At the beginning of the month we fasted together with our ward at church and many others while praying that Graham would be able to see, and just two days later he opened his left eye for the first time.  He has been able to see color, count, and read, which has been an enormous blessing.  His right eye has only just recently started to open, and just a crack at that, and today we started to test it for the first time in occupational therapy.

Graham's occupational therapist started off his session like normal, but then part way through worked with Graham to tape his right eye open.  She patched his left eye (the he's been able to open and see out of) so that she could try to determine exactly what he is seeing with the eye that's been closed.  As she recounted her observations to me, her eyes moistened and she choked up just a bit.  She repeated Graham's description of what he could see:  "Ummmm, mostly black."  She said he did appear to be responsive to light.  Graham described being able to see a little "to the left and to the right," and said that he was reactive to her hand coming towards his face, although it might have just been a reaction to the fanning motion of her hand.

At this point we are not entirely sure what this means.  We've known blindness might be a possibility for some time, and the fact that he can even see out of one eye is a miraculous answer to fasting and prayers.  Graham has exceeded everyone's expectations, and so to at least a small extent it feels like we are playing with house money.  His neurologist here has ordered a very detailed MRI for next week, so we should learn a lot about his vision and other parts of his brain as well.  It will be used to provide a guide as to what will respond well to therapy now, and what will just take time to heal.

I have to say it is so comforting to see therapists who, like Graham's nurses at Children's, care so deeply for him.  Anyone doing any "job" can get burnt out and resort to checking boxes and punching timecards.  I wouldn't blame anyone if they did that in their job - it's human nature.  But to see wonderful people who seem to be as invested in Graham's recovery as we are has made this summer much more bearable.

So we will wait to see what the MRI shows some time next week, but in the mean-time Graham continues to make great strides.  After OT he was able to say what he played during his session (Go-Fish) which was a good demonstration of short-term memory.  He was also able to recount his special visitor from earlier in the day - Santa Claus.  Yes, it's Christmas in July here at Cook Children's!  Graham got to Sit on Santa's lap, enjoy a snow cone, and have a wonderful July 25th holiday.  He will have some therapy tomorrow morning, and then enjoy a very restful Sunday.  We will be anxious to see what the MRI reveals, and will be prayerful that he continues to make progress in all areas, including his vision.

Puppies, Prayers, and Frozen Yogurt

Graham Update Day 45 (7/23/14)

Graham had a great first day at Cook Children's Hospital.  He has thoroughly enjoyed his therapy, the nurses, and all that there is to do at the hospital.  I am now even more confident than ever that it will be a great last stop before we can finally bring Graham home in 3-4 weeks.

We started the day off with one of Graham's favorite breakfasts - pancakes and bacon, topped off with a delicious "smoothie" (PediaSure).  From there he hurried off to his first full physical therapy session.  It was sort of like a watching a workout video for 6 year-olds - he worked out his hips, legs, arms, hands, and the rest of his body with lots of varied movements and at a fairly brisk pace.  Graham had a smile on his face the whole time, but was also pretty dang tired by the end of it.

During occupational therapy Graham was one-on-one with his therapist.  In fact, most of his therapy will be one-on-one, with Lindsey and me off in the distance watching.  Whether or not this is a good thing depends on which one of us you talk to.  Having both been very involved in his therapy at Children's, I know FOR A FACT that I myself get in the way and probably distract Graham more than I should.  So I think it's probably for the best, while of course Lindsey wants to be as involved as possible, and for good reason - she will be the primary source of exercise and rehab for Graham for years to come, and she, unlike me, can be involved without being in the way. 

At any rate, we are trusting the staff here and watching from a distance.  So his occupational therapist brought Graham back to the room after her session and said he did very well, and also mentioned some areas for improvement.  She said he is so sweet, "in fact he almost made me cry."  As she said that her eyes welled up with tears, and she went on to explain that at one point in therapy Graham seemed to be getting tired, and the next thing she knew his arms were folded and his head was on his chin.  At first she thought he fell asleep, but then realized he was whispering something. The only thing she could make out was "bless this day..." but it became very clear that Graham stopped in the middle of his therapy session to say a little prayer and ask for help.  Graham's faith and fight never cease to amaze me.  I'm so proud to be his dad, and I will forever look up to him for so many different reasons. 

The rest of Graham's therapies went well, and Graham was released from "isolation" today.  If "isolation" sounds like prison, that's because it sort of is.  Graham came from another hospital, and for everyone's safety they swab different parts all over his body to make sure he didn't pick up some crazy bacteria at the last facility.  They then require him to be in his room, except for therapy where he wears a gown, until the tests come back negative - which they did - just to make sure he doesn't spread disease.  I'm grateful for the precaution and Graham didn't even notice.  But about 24 hours into our stay he was cleared to move about the hospital, which we did!

We stopped by the frozen yoghurt place, viewed a HUGE Lego replica of the hospital, played with therapy dogs that were brought in to play with the kids, ate at the Chik-fil-A downstairs in the food court, and stopped by the recording studio so Graham could play drums, guitar, piano, and the harp.  Graham walked every step of the way, using his wheelchair only for in-room meals.  His strength and endurance are markedly better than they were even a week ago, and he is speaking more articulately every day.

Not a day has gone by since the accident since where I haven't stopped and said, "wow," at something amazing that Graham has done.  Some are extremely memorable -   Day 1 - He lived.  Days 3 and 4 - his brain pressure never went up to dangerous levels like EVERYONE thought it would.  Day 11 - they removed the ventilator, and after 3-4 different people thought they would have to put it back in, Graham fought through and kept it out.  Day 45 is going to be one of those days.  Not only was it awesome just to walk around and "be normal" with him, but hearing how he stopped to pray in the middle of his therapy session is the stuff of legend.  I'm so grateful that God and Graham's doctors have gotten him to this point, and that his sweet little self continues to shine through in so many ways.  Thank you all for praying for Graham, and please keep the prayers coming!

@Prayers4Graham

New Beginning

Graham Update Day 44 (7/22/14)

Today started off in utter chaos.  We knew last night that Graham would be transported sometime after 10:00 this morning.  Graham and I had a late night due to some late afternoon naps on both our parts, and we weren't exactly the early birds getting the worm today.  Still, we were good to go for a 10:00 departure, but you can imagine our surprise when Graham's nurse woke us up at 8:05 and said - "did I forget to tell you he's leaving at 9:00?"

So we packed, ate, showered, and got everything ready just in time for his paramedics to pick him up.  It was actually the same two that picked him up from his last rehab place.  So we skipped the goodbyes and headed down to where his chariot awaited.

There are a lot of things that incite anxiety in us.  Backing up the car.  Driving in a neighborhood.  Watching children do anything thing that could result in a head injury.  Walking past the critical care room in the ER where we saw Graham for the first time after his accident on the way to the ambulance?  I had to catch my breath.  So many memories came flooding back.  Lindsey I and were a wreck.  We had baby Isla with us, and she was fussy!  Graham laying on a table, motionless, with his clothes cut off and in a bag nearby.  Not knowing whether he would make it 45 minutes, let alone 45 days.  Even as I write this all those emotions, images, and thoughts come flooding back into my head. And it makes me so grateful.  There is just no way Graham could have lived if the medical staff were not so caring and expert.  His recovery wouldn't be anywhere close to what it is so far.  His potential would be more limited.  And even with all their care, his recovery is a medical miracle- thanks to God and all those who prayed for his good grace to shine on our sun.

Likewise, our family could not have made it through this ordeal alone.  We've felt lifted up by so many prayers.  Our church was literally at our beck and call.  The community and people from around the country have supported us.  And our family has flown in from across the country to be at our side and anchor our home from day 1. 

The day of Graham's accident was the worst day of my life.  But around that darkness shines a light from so many people and the light from an amazing little fighter, proving that the world is good, and God loves his children.  I don't think God makes everything happen.  Sometimes bad things happen to good people, not because God intends them, but because everyone on earth can choose right and wrong, and make choices that prove to be mistakes.  But in Graham's case, I really feel like things happened for a reason.  I think Graham was picked for this challenge because he is strong enough to handle it, because it will make my family stronger, and it will bring us and others closer to God.

So our stay at Children's ended where it began, and we begin what we HOPE will be that last chapter in this story before Graham comes home.  Call it the end of Act 1. 

The rehab floor here at Cook Children's has been nothing short of amazing so far.  I'm sure it has a little bit to do with wanting to 1-up a rival.  Also, people here have probably been told to handle Lindsey and I with kid-gloves since we effectively fired one rehab facility already. But mostly Cook Children's just seems right for Graham.  They have a more robust medical staff in place to care for him.  And everyone from the nurse, to the nurse practitioner, to the neurologist, to the pharmacist came to visit Graham personally.  His medications were on time and administered properly.  He was able to eat lunch at noon.  And the therapists seem to take a team approach - which is something that has proven to be effective in caring for Graham since day 1.   In short, our first day here has been a 1000% improvement over the last time we left Children's, so we have every reason to be very optimistic that things will go well this time.

Graham also seems very comfortable with his therapy team, warming up to all of them and not withdrawing like he did last time.  Another thing has been very comforting - a clear commitment to Graham's safety. Sometime this afternoon after evaluations we had the discussion about the length of Graham's stay.  In discussing the matter previously, both people at Children's and Baylor said that length-of-stay is directly related to what insurance will pay for - that at the end of the day it's HMOs and not MDs calling the shots.  That reality has never set well with me though.  And as I was trying to tell them that we would pay for a longer stay than insurance would cover if they felt it was medically necessary, Graham's neuro-team cut me off and said "Graham's ability to go and be home safely is the only thing that will allow him to be discharged.  If we get paid, we get paid.  If we don't, we don't.  But we will not send him home until it is safe."

Where everyone else has said Graham's rehab stay would be 1-2 weeks and driven by insurance approvals, Cook Children's, after his evaluations today, estimates that Graham will be here for 3-4 weeks, and that stay will be driven by his safety.  I'd be naïve if I didn't think it couldn't possibly be lip service, but it did seem genuine and was VERY comforting.  We can do another month.  We can do whatever is best for Graham.  We are just happy to be by Graham's side as this amazing little fighter continues his miraculous recovery.  And we are grateful for all the professionals and faithful prayers that are making it happen.

#Prayers4Graham

Progress, Movement, and a Storm on the Horizon

Graham Update Day 43 (7/21/14)

Graham is wrapping up his last full day at Children's Medical Center and preparing to leave tomorrow morning for the rehab floor at Cook Children's Hospital in Fort Worth.  This time we hope it's really his last day here.  It's been a month and a half since his an SUV ran over his head, and it has been a little more than three weeks since brain surgery.  It still blows my mind when I think that 43 days ago I didn't think that Graham would survive his accident, and now he is doing all of the following things, each of them being new to Graham in the last 48 hours:

• Walking to and from the hospital gym without ANY balance assistance.  He's a little wobbly and his therapists always hold their arms just outside of his frame like a halo, but he's doing it 100% on his own - no canes, walkers, wheelchairs, rails, or helping hands.
• Convergent Thinking - Graham can now be shown an apple and a banana and let you know that they are fruit.  In other words, he can tell you in what group a specific object belongs.  He couldn't do that to save his life even a couple days ago.
• Divergent Thinking - The opposite of convergent thinking:  Graham can tell you an item that belongs in a specific group.  For example - "name a vegetable?"  One answer would be "carrot."  Graham is all over that!
• More short-term memory progress:  Yesterday I told Graham I was going to name three things and then tell him a story, and after the story I would ask him to recall those things.  I picked three completely unrelated things - ball, lion, plate.  I then told him a short story that lasted about 30 seconds.  After the story I said "Do you remember the three things I asked you to remember?"  Graham's answer: "Ball.....Lion......Plate."
• Throwing and releasing items with his right hand:  Graham has been able to throw things for weeks, but about 99% of the time when he tries to throw with his right hand, he is unable to release it.  His timing has just been off.  Today he seems to have found his timing though, having very little trouble in throwing items across the room (on purpose of course) with either hand.
• He's also using both hands together really well.  For a long time they have been able to work well independently, but today he played basketball and made a lot more shots than he missed.  He also got to swing the bat around and knock a beach ball out of the park!
• Talking in a normal voice - one week ago Graham would only occasionally speak in a normal voice, and only on command.  Otherwise, he would either use hand signals and gestures, or else he would whisper or even just mouth the words he was trying to say.  Now about 50% of his regular speech is his awesome voice.  He's speaking more articulately too.  Just last night when I was chatting with Graham I asked him a question.  He was trying to think of the answer, and he said "It's right on the tip of my tongue..." before finally recalling his answer.

So yeah, Graham is making remarkable progress.  There is still a lot to work on - he's not walking smoothly enough to turn him loose yet.  And while he can go up and down stairs holding on to a rail, it's not safe to leave him alone to do that either.  He can stand and throw without any balance assistance, but kicking a ball is another story - he can kick just fine, but left to his own devices he would fall down pretty quickly.  And while his recognition and memory are improving, he still has a long way to go.  Plus his right eye still only occasionally opens a crack.  But that's OK!  43 days ago I thought he would still be in the ICU, and here he!  Besides, that is what a 1-3 week stay at Cook Children's is for, and that's why they have out-patient rehab facilities.

So moving day is tomorrow.  Lindsey and I are prepared to give full instruction on everything Graham needs -How much his DDAVP doses are at morning and night, how to measure the doses in both micrograms and units, and how what syringe to use and how to draw the medicine into it.  We will also have food ready for Graham in case it takes a while to get his "food orders" into the system.  In short we are ready to manage Graham medically on our own, and just rely on Cook for rehab, if needed.   We're certain though after visiting their facility that they will provide an exceptional level of care.  We're just ready to prevent the fiasco that happened at the last place should all hell break loose.

One thing that has worried me for a long time is that at some point, Graham will become much more aware of everything that has happened to him, and become aware of the things that he struggles with.  It was that worry that drove me to request that if anyone has been touched by GRAHAM (not touched by anyone in the rest of our family, but touched by GRAHAM) that you send him a note to Prayers4Graham@gmail.com to tell him how he has helped you, in hopes that he will someday see the silver lining which Lindsey and I see surrounding his accident.

Today after occupational therapy, his therapist pulled me aside to give me both a word of encouragement and a word of warning.  She said Graham's progress is amazing, both in terms of the pace and the degree of his recovery.  She said that Lindsey and I need to be aware, though, of something she has seen over and over again in her experience rehabilitating kids with brain injuries:  at the rate Graham is going, he will soon be much more aware of where he is and the things he can and can't do.  He'll start doing puzzles or writing things, and he'll wonder - why is this going so slow?  Why can't I do this the way I used to?  She said that Graham is a very happy kid, but even happy kids get down, get frustrated, and get sad.  It's a reality that I can just now start to see it on the horizon - today right before physical therapy we had to wait just a minute for his "teacher" to step out.  While we waited to "go to the gym" Graham got very excited and said "How come I can't just hop out of bed and go?"  His desire to do might finally start to exceed his ability, at least for a season.  It makes my heart ache to think that after all the physical pain he has endured, the emotional trauma might meet or even exceed it.  So while Lindsey and I ride the waves of joy that come with his progress, we are careful to watch for signs of distress in Graham.  We pray that his burden will be lifted, that he can power through his rehab, and get back to being "Happy Hammy" at home some time soon.

#Prayers4Graham

Memories!

Graham Update Day 41 (7/19/14)

The past two days have been very good for Graham.  It's been 41 days since his accident and 22 days since brain surgery, and he continues to show steady progress despite a rough start to the week.  In the past two days Graham has turned into a human pin-cushion, a magician of sorts, and continues to show more and more of his funny personality.

There are some things that Graham has, not surprisingly, struggled with since his accident.  He really hasn't shown much of a short-term memory at all.  Things definitely become familiar to him, but he hasn't recalled details from previous days or even hours that he normally would.  For example - as much as he enjoyed seeing Spiderman outside his window about a week ago, he didn't remember it the next day.  Nor does he recall things like what he ate or did earlier in the same day.

The day we got back to Children's, I asked Graham in the E.R. "what is your favorite thing to do?"  He gave one of the best answers he's given since the accident: "Play with my Lego Friend, Parker," - his best friend from school.  Well yesterday Graham was elated to see one of his favorite visitors yet - his friend Parker.  They sat in Graham's bed next to each other for about an hour, chatting and building Legos.  It was very therapeutic for Graham, and even after Parker left Graham seemed to be more aware of everything around him.  In fact, when speech therapy asked Graham "Where are you right now?"  Graham answered - the hospital.  It was the first time Graham was able to identify where he was without any sort of prompting, and a VERY good sign for his healing brain. 

The best surprise stemming from Graham's "Lego Friend Parker" came today though.  Graham got a visit from his brothers, and Brode closely inspected the new Lego set that Graham and Parker put together.  Brode asked Graham where he got it.  His answer?  "I built it with my friend Parker."  It is literally the first time we have seen Graham demonstrate his short-term memory, and it is both a huge blessing and a relief!  Quietly, I've had visions of that Adam Sandler / Drew Barrymore movie "50 First Dates," where Adam's love-interest loses her short-term memory.  Not a comforting thought at al, so seeing a functional memory from Graham is a HUGE breath of fresh air.

Graham is really coming along in his therapy.  He can now stand without any balance assistance - 100% on his own - for about 20 seconds.  He can also take about 8 steps completely unassisted.  He can stand on his own and throw a ball.  Write his name with either hand (he was predominantly left-handed but largely ambidextrous before the accident), and no longer shows any weakness at all on his right side.  When shown pictures of various superheroes, he also recalls their names much faster, even the more "obscure" (to Graham anyway) heroes like Hulk and Ironman. 

In spite of all the blessings we have received during Graham's miraculous recovery, we still do more than our fair share of worrying, both about Graham and our other kids.  I have extreme anxiety doing simple things like walking Rocco through a parking lot or watching them play around the coffee table.  I'm not sure if there is a named phobia for "fear of your child receiving a traumatic brain injury" but if there is - I have it.  And then with Graham we of course worry all the time - about his sodium, Graham falling, seizures, you name it.  But last night we had a very strange reason to be nervous:  a UFO.  Yes, an Unidentified Foreign Object was found in Graham's diaper.

This is of course very concerning for many reasons.  What is it?  How did he eat that?  What else did he eat?  Is anything stuck?  Is he in danger?  After hours of consulting with the nursing staff and getting an x-ray to make sure his UFO was flying solo, we think we finally figured it out - it was a cap from a blood-draw procedure that they were trying to spare his little pin-cushion fingers, and we are fairly certain that he somehow stuck it in just the right place to make it seem as though it has passed through his digestive system.  The x-ray showed no other foreign objects in his body, so our little scare turned into much ado about nothing.

I've mentioned a couple times now how Graham has turned into the human pin cushion, and here is the evidence:

Every 6 hours Graham has to get pricked so they can draw about 3 milliliters of blood - enough to fill up a very small vial, and significantly more than a diabetic would need to put on a testing strip. So they prick his little fingers and milk them for about 5 minutes.  But in spite of his bruised little fingers, Graham never complains and powers through all his normal activities with his mummy hands.  He even finds ways to be funny with them.  He was going to the bathroom yesterday and before he released the hounds, he held up all the bandaged fingers on one hand, put them in my face, and said "wait for it....wait for it....wait for it.....aaaaaah" and then let loose.  It's "so Graham" and its so satisfying for us to see the return of his awesome personality.

We're very grateful for Graham's continued progress, and are so grateful for all the wonderful doctors, nurses, and good prayerful folks near and far who make his recovery possible.  There was a time - especially the day of his accident - when our faith in God gave us comfort in knowing that if Graham were to pass, our family would be together forever and we would see him again.  It was a great comfort.  But we are grateful that the immediacy of those thoughts have passed, and we can now stand back more and just be grateful for all the miracles we see daily in his recovery.  Thanks again for all who help it to happen.

#Prayers4Graham

Seconds, Seizures, and Superman

Graham Update Day 39 (7/17/14)

The last 36 hours have been crazy, to put it mildly.  We are back at Children's Medical Center Dallas after a second trip to the ER, although we are not entirely sure how long we will be here.  Graham had a seizure today, but in spite of everything he's been through, his brain continues to heal and amazing people continue to bless our lives - like Superman for instance.

So in Graham's last update we highlighted some of the problems he was having with his previous rehab facility.  Things got worse and didn't get better until we wound up at the emergency room back at Children's Medical Center.  But before I get into all that, let me say this:  We are choosing not to be angry.  Anger will serve no purpose for Graham, and as our brother-in-law said, it will not put us in the position of humility in which we need to be to effectively pray for Graham's recovery.  We are focused on Graham and his recovery, and while I will share some of the details of what led to his trip to the ER, we do not harbor ill feelings, and I hope nobody else does either.  OCH at Baylor is a good facility with good therapists, but it was not the right fit for Graham and his medical needs.

So as of Tuesday night Graham was having trouble with dehydration and the timing of his DDAVP shot to block his "break-through' of urine flow.  On Wednesday we learned something else though as well - the needle they were using to administer Graham's medication was both too long and the reservoir too big.  The result is that a fairly good amount of his medication (a tiny amount of fluid to begin with) ended up in the needle and not in Graham. 

To illustrate - imagine there is an 8th of a teaspoon of your favorite beverage in the bottom of the glass.  If you tried to suck it up with a big, long straw, it would never make it to your mouth - it would fill up the straw before it got there.  If, however, you tried to suck it up with a coffee stirrer, you would get a lot more of the liquid.  And so it was with Graham's medication.  We know based on some of his lab results that  that he must have been getting something, but it is possible and perhaps probable that Graham never got  a full dose of his medication during his entire stay at OCH.

The result of everything that happened is that his sodium skyrocketed and Graham got dehydrated enough that they eventually could not even draw blood to test it again.  They pricked his fingers and toes, and tried 4 times to insert an IV.  All attempts failed, and unable to draw blood and assess his health, they sent him back to the ER at Children's.

Once in his E.R. stall, Graham was quickly given an IV and fluids.  And there must be something they put in the air at Children's that makes children heal, because beginning that night Graham displayed unprecedented levels of awareness, responsiveness, and overall brain function.  In fact, since coming back to Children's, despite getting minimal amounts of therapy, Graham is doing better than he ever has.  It's the sunshine after the storm.  "Dispute not because ye see not, for ye receive no witness until after the trial of your faith."

A few examples:

• When Graham was getting his IV, a tech who helped the nurse was a very tall man with a huge, bushy lumberjack beard.  When Graham saw him he made a very funny face, froze, and pretended to be scared.  I told Graham "He has an Obi One Kenobi beard! (Star Wars)"  Graham nodded and smiled.  Then I asked, "Or is it a Chewbacca beard?"  Graham responded by giving the best Chewy impersonation that has ever come out of the mouth of a six year-old.  It rolled out of the back of the throat loudly and was pitch perfect. Graham's sense of humor at his finest.
• Whenever we adjust Graham's bed he puts his hands behind his head, closes his eyes, and says "aaaaaaah."  Something Graham said often before the accident as well whenever he would curl up on the couch or in bed is "comfy cozy!"  Well when we adjusted Graham's bed in the E.R., LINDSEY said "Comfy-Cozy!"  Graham responded by saying - "Hey, that's my line!"
• The endocrine floor gave Graham a Harry Potter Coloring book, which Graham LOVES.  As soon as he saw it, Graham felt his face and said - "where are my glasses?"
• This morning during his physical therapy assessment, Graham was able to stand up straight without ANY balance assistance for 18 seconds.

So in spite of everything, Graham continues to get better.  It is a clear result of his fighting spirit, a great medical foundation that was built during his first month at Children's, and the prayers of so many who love Graham and support him and our family.  He did have a mild seizure today while riding a trike during therapy.  It lasted about 4 seconds and left Graham dazed and confused.  When Dr. Braga came in later he said that Graham has a lot of reasons to have seizures, given his brain trauma, high sodium, and rapidly swinging sodium.  At this point it seems no damage has been done, so we can keep moving forward.

We will pick up where we left off with therapy here at Children's.  This is not an inpatient rehab facility though, so we will have to go somewhere else in the coming days.  Lindsey and I think that somewhere will be Cook Children's Hospital in Forth Worth, Texas, although we are not entirely sure.  It is about an hour away from our house, and we toured the facility with one of the therapy managers today.  It is an amazing place, is more family-friendly, has a more robust medical staff, and the best part is that it is found on a floor of a dedicated children's hospital.  That means that Graham will have all the medical resources he needs to have in the same building where his rehab will take place.  So we hope to end up there when our time here is up, but things change fast so we will see.

A huge thanks to our friends Steve and Ashleigh Pollock.  They are friends with a rather famous individual, and they brought him along to Graham's hospital room today, where Graham was enjoying a pizza party with some of our best friends.

Yes, the muscles are real, not foam.

No, they are not as big as they look in the pictures.  They are MUCH BIGGER than they look in the picture.  This guy was YOKED!

Yes, Graham and all the kids loved it.

No, I don't feel adequate as a man anymore.

Yes, he is as nice as he looks.  Even nicer in fact.  He held Graham up, Graham smiled in amazement, showed superman some muscles of his own, and then went in for the superhero hug and wouldn't let go. What an amazing man to take time from everything he has going on to brighten the day of a sick boy and brighten the day of that boy's friends and family, all of whom worry to death about him.  He was seriously one of the kindest men I've ever met, and in spite of those bulging biceps, barrel chest, and tree-trunk legs, the biggest muscle in that man's body is his heart.

Graham is getting better everyday, and still has a long way to go.  We are so grateful to God and his medical staff for healing our son, and we are grateful for all those who pray for and support Graham.  Thank you all.  And if Superman is out there as well, thank you too - you are a TRUE SUPERHERO.

#Prayers4Graham

Setbacks

Graham Update Day 37 (7/15/14)

There were a lot of eyebrow-raising things that happened yesterday upon being admitted to Our Children's House at Baylor.  At the time we chalked these up to the chaos of admitting a new patient, but these isolated incidences have unfortunately blossomed into a disturbing trend that has resulted in a pretty significant setback for Graham. 

Everything was fine when we arrived at the hospital.  They had a very nice lady who had been meeting with us since at Children's since last week to ask questions and prepare both sides for transport day.  The discharge from Children's went well, as did the ride over.  Upon arriving we did the customary meet and greets with doctors, nurses, and therapists.  When it came time for Graham to pee though, we asked them how they wanted us to save the urine so they could measure it and send it in for labs.  The nurses looked at us like we were crazy and said "why would we do that?"  We chalked it up to Graham being new at the hospital, and perhaps the orders had changed upon transport.  Still, it was odd that they literally had NO IDEA what we were talking about - there had been ample time to check Graham's charts, and there had been coordination between the two facilities dating back to his second week in the ICU. 

As lunchtime rolled around we had been at Our Children's House at Baylor for an hour, and we asked the nurses when Graham would get lunch.  We were informed that his eating order had not been put in yet, but that we could find some graham crackers in the nutrition station.  So no lunch.  12:00 turned to 1:00.  1:00 turned to physical therapy for a hard workout and then 2:00.  Lunch?  PediaSure?  No chance - orders were not in the system yet.  Finally at 3:00 I convinced a tech to take me back to the supply room to smuggle some contraband nutrition into Graham's room.  Graham of course sucked them back like a ravenous animal.  Who can blame him? He had brain surgery and then two weeks later the medical staff at Our Children's House has him fasting.  And when it was time to pee late in the afternoon?  Nurses still looked at us like we were speaking Yiddish.

Still, we decided to chalk it up to the first day.  Things would be better.  Only they weren't.

As a result of Graham's injury he has a condition known as diabetes isopodous.  Because one part of his pituitary gland is not functioning, his body cannot currently regulate his urine flow.  Left untreated, and still unable to demonstrate a functional thirst mechanism, Graham will literally pee himself to death.  That's why at exactly 8:00 - morning and night - Graham gets his DDAVP, which essentially tells his body to stop peeing itself dry.

Well Graham finally got lunch at 3:45 and dinner 90 minutes later.  So fast-forward to 8:15 p.m. - 15 minutes after he was supposed to get his medication.  Graham is peeing like a racehorse, and I ask his nurse where his drug is.  She said she called over to the pharmacy DOWN THE STREET at 8:00 and they were working on it.  8:30.  8:45.  Finally at 8:55, after an hour of peeing almost continuously (and remember - they still have no idea what to do with it at this point), they finally bring me his syringe - with no needle attached.  I tell the nurse that this is a subcutaneous shot, like insulin, and that he will need a needle to inject it.  So an hour after he was supposed to get his dose, and certainly dehydrated, Graham finally gets the medication that Children's worked for month to get right.  I told the nurse "this CANNOT happen.  He can't get it late.  He will dehydrate himself."  So her boss fed me some BS line about how the medication has an hour-long window to be given.  Well guess what?  I don't care how long it can last outside the fridge.  Graham needs it at 8:00.  And the worst part?  It's not time, Graham's going to sleep soon, and has no time to catch up on fluids.

The next morning it didn't come as a big surprise that Graham's sodium had shot up from 141 to 155 - a HUGE swing in such a short time.  Nor was it a huge surprise, given the goings-on of the previous day, that they were late with Graham's medication yet again. 

Having sodium that high has a tendancy to make people nauseous.  But that didn't stop them from taking Graham to a hot gym and giving him the longest workout he'd had to date.  The result?  Graham threw up all over.  Big shocker - you dehydrate someone and send them to hot yoga and what do you expect to happen?

We did get a visit in the afternoon from the hospital administrator, just to meet us and greet us.  And when it came time to ask us "do you have any questions or concerns?"  we let it all be known.  She was very apologetic and said it was inexcusable, and let the staff know that there was a patient-care issue.  And that is when the finger-pointing began:

"Children's Medical Center didn't give us all the information we needed."  I'm sorry - if you are not ready to admit a patient, don't admit them.  And try reading the Graham's chart.

"You guys need to make sure Graham is drinking enough."  Well guess what?  We are.  We have been holding a straw to his mouth at every waking minute for a week.  He drank more than what the doctor ordered.  Don't you think perhaps letting him pee uncontrollably for 1 hour last night and 20 minutes this morning had anything to do with it? 

Clearly not, because after all was said and done, they were 20 minutes late with his medication again this evening.  And they are already talking about sending Graham back to Children's in a day or two - which we almost welcome at this point.  We have been utterly down and devastated, but at least the setbacks haven't affected his long-term health yet.

We've learned a lot these last 36 hours.  First, we are so grateful for friends and family who lighten our load and allow us to be present at the hospital 24/7.  We have gained at least a surface-level knowledge that has proven useful in pointing the nurses in the right direction.  It makes us think - what if we couldn't be with Graham and learn about his treatment?  What if we didn't have all the help from our church and family that we do?  How bad would things be if we couldn't be there with Graham?

Second, it makes us even more grateful for Children's Medical Center of Dallas.  That place and those people are heaven on earth and its angels, respectively.  We are so blessed that Graham could go there to get better, and I am even more convinced now that it is the best children's hospital in the world.  Children's may be too good, in fact.  Perhaps yesterday was all-too-normal for a hospital setting, and we've just been spoiled by spending a month at THE best.

Finally, as if we didn't know it before, we've learned anew that Graham is unshakable and absolutely amazing.  Less than 30 seconds after tossing his guts, Graham was smiling again.  And tonight, at the end of a hard day?  Chilling on his chair with White Tiger Jr. and a big smile on his face.

We know this setback is minor, worrisome though that it is.  And we knew from day 1 that setbacks would come, even if they were preventable.  We're blessed that this has been the first one of any real significance.  But it has been hard and taken its toll and Graham and our family.  We don't know what the next few days will hold for Graham, but with everyone praying for us and for him we are confident everything will be fine.  Thank you all for everything you do for us, and please keep praying for our little fighter.

#Prayers4Graham

Moving Day

 

Graham Update Day 36 (7/14/14)

 

Today was a very big day for Graham.  It marks the end of his treatment at Children's Medical Center and the beginning of his rehab at Our Children's House at Baylor.  His transport was definitely a happier occasion than his last ride in an ambulance, and upon arriving at Our Children's House he met a whole new host of people, and showed off some great new tricks.

 

We started off the day by loading up Graham's stuff in a wagon and taking it all down to the car.  We then took Graham back up to the ICU for the first time since he left.  We had a wonderful surprise on our way  - Dr. Braga, Graham's brain surgeon, came in on his day off to say goodbye to Graham.  I remember the first time that Graham saw Dr. Braga with his own eyes: It was less than a week after moving to the neuro floor from the ICU, and Dr. Braga walked in Graham's room for rounds with his team, and Graham gave the biggest smile that he'd given up until that point in time.  Today was no different.  Graham doesn't understand yet everything that has happened and is happening, but it's as though he feels just how important Dr. Braga is. 

 

Once at the ICU, He gave hugs and said goodbye to a lot of people that took such great care of him, and then we headed back down to the room to wait for his 10:00 transport.  We got a wonderful surprise - two of our favorite ICU nurses came to say goodbye to Graham.  Graham gave them both hugs, but when it came time to hug the nurse who loved him from his first day, and took the time to meticulously clean his face and speed up his surgery - Graham wouldn't let go.  It reminded me of the time a couple weeks ago when Graham saw doctor Braga - he acts like he can feel how much his ICU nurse and his brain surgeon have done for him.

 

 

 

Then it was time for transport.  Some EMTs came up with a gurney and Graham climbed on up.  They fastened him in and secured him, then moved him down to the ambulance with Lindsey on board and myself driving right behind.  Graham seemed to think it was cool - they even put on "Finding Nemo" for him to watch along the way.  It was definitely a better circumstance than the last time Graham rode in an ambulance 36 days ago.  The only real hiccup was the sun - Graham is still not opening his right eye much at all, and the pupil in his left eye is not very reactive.  It responds a little bit to light, but for the most part is wide open all the time, allowing copious amounts of light in.  So to combat the bright sun in the sky we used a very advanced medical technique which is clinically called "put a towel over his head."  So that advanced medicine is what you see in the pictures below.

 

We arrived at Our Children's House a bit before 11:00 this morning.  We then had about 4 hours of meeting people, evaluations, paperwork, and even a little nap for Graham.  Everyone was very nice and seemed to be very good at what they do, but it will be very hard for them to top the performance of his Physical, Occupational, and Speech Therapists back at Children's. 

 

They certainly didn't waste any time in challenging Graham.  He walked down an entire flight of stairs, had his flexibility tested, walked backwards, walked sideways, and more.  One of the things that surprised Lindsey and me the most was the control he showed with his legs - he was able to walk on a straight line, one foot in front of the other.  So yeah, Graham can pass a field sobriety test, as long as he has a physical therapist to hold on to his little therapy belt.

 

 

 

 

So we begin a new chapter.  There is a lot of emotion as we move from an emphasis on saving his life and stabilizing him medically to a focus on relearning the things that have escaped him in the last 36 days.  But we are so grateful for Graham and his progress, and for the blessing that it is for Graham to be where he is.  When we met his doctor this afternoon she was VERY amazed that Graham has come so far, so fast.  Just more proof of the power of fasting and prayer.  Thank you all for praying for our son - it's working.  Please continue to pray for him with us that he will continue to progress towards a full recovery in his therapy. 

 

#Prayers4Graham



Unsung Heros

Graham Update Day 35 (7/13/14)

Yesterday one of Graham's best friends from church came to visit Graham in the hospital.  He read some stories to Graham, ate popsicles with him, and helped Graham with his physical therapy - passing balls back and forth from side to side, and chasing down the balls that Graham was kicking and throwing.  He is such a great friend, and it was VERY helpful to Graham yesterday.  As I saw that little boy helping Graham and playing with him, it made me think of all the people who have helped us along the way these last 35 days.  So tonight, I just want to highlight a few of the people who work here at the hospital who really helped Graham get to where he will be tomorrow:  Baylor Children's House.  This list is by no means a comprehensive list, just a few people who come to mind as I type.

First is a nurse that Graham met his first or second night on the neurosurgery floor, less than two weeks after brain surgery.  We'll just call her the Neuro Nurse. Graham was not really talking much at that point.  He still had a feeding tube in his mouth.  Unlike today, Graham spent more time sleeping than awake, and yet every time she came in the room, whether Graham was sleeping or awake, she would gently pat him on the arm or shoulder, and talk to him.  She'd say what a sweet boy he is, or how great he is doing, or something else that was positive and encouraging. Now all the nurses both in the ICU and on the neuro floor have been wonderful.  But to see someone who cares for Graham that way just melts my heart.  As a parent in the home, you are in control, or at least you can pretend to be.  You love, teach, discipline, and talk to your children.  But it's not just the things you do, it's how you do them.  And how you do the right things is just as important as doing the right things in the first place. 

In the hospital, on the other hand, parents are mostly helpless.  We can't simply kiss the ouchy.  Nor can we hug away the tears.  How you do things as a parent in the hospital doesn't matter all that much, because my hands aren't on the smart end of a scalpel, nor is my training in any way relevant to how much of a life saving medication my son gets.  So as I watch helplessly on, thinking about HOW much better I'll do things moving forward, it brings peace to my heart as I see HOW this wonderful nurse treats my child.  She is caring for my son in a medically meaningful way, and despite the fact that she has 4 other kiddos and may not even have Graham on her next shift, she treats him in a way that is downright motherly.  As a biased parent I'd like to think that Graham is just THAT easy to love (and he is!), but I know that his nurse is just THAT good of a person, and just that good at what she does.

Our first full day in the hospital was rough.  The adrenaline had settled from the night before, but the tears were still very fresh.  My son's head had been run over the day before by an SUV, and when I saw him for the first time I honestly thought he would die.  I spoke to a hospital chaplain in Graham's room that next day, and he just asked me about Graham.  I told him that Graham was a sweet boy, sweeter than most.  Maybe the sweetest.  I told him that Graham loved dinosaurs and Legos, Star Wars and superheroes.  And as I did, I just cried.  In my mind I wondered - even if Graham lives, would I ever see him enjoy those things again in this life?  Would his sincerity and sweetness pour through his every action like it did before the accident?  Would I see him smile?  Would I hear him laugh?  I never cried so much in front of one person in my whole life, and Graham's ICU nurse was there working away I as let it all out.  Once composed just a little bit, I noticed how she cared for my son in that same motherly way.  She looked at my son the way my wife looks at my kids.  When she moved his hands, checked his eyes, and cleaned his wounds, she was as gentle as one could possibly be.  And she was so positive both with him and with Lindsey and me.  She talked to us about other kids who came in worse off and had wonderful recoveries.  She gave Lindsey and me a seed of hope that so many prayers and wonderful people nurtured and helped to take root.  I've said many times that after the first or second day I didn't cry for Graham any more (but still weep often at the wonderful love and gestures that come his way).  His ICU nurse was a big reason why.  I don't know how anyone could see her do what she does and not think "this is the best person on the planet to care for my child RIGHT NOW."  She didn't care for my son like it was her job.  She cared for him like it was her calling.

Her role in Graham's speedy recovery would only grow after day 2,  though.  For a long time, Graham's brain surgery was set to take place in "1-2 weeks."  That's what we heard on days 1, 5, and 12.  Once Graham became stable enough to have his EVD (brain drain) removed on June 23, his doctors said that the abrasions on his face and head would have to heal A LOT MORE before they operated.  At the time, that would mean brain surgery on some day after the 4th of July, when Dr. Braga's schedule matched up with the plastic surgeon and the operating room.  But Graham's ICU nurse wasn't having that.  With Graham's scalp now clear of his EVD hose, she went to work.  For the next hour or two, she gently and meticulously hunched over Graham's bed and began cleaning his wounds.  She would spend several minutes gently washing away the dried blood, brain fluid, and whatever else was on there about ONE SQUARE INCH on the right side of Graham's head.  And then she would move on to the next patch with all the care of a mother and the apparent precision of a surgeon.  By the time she was done, Graham looked like a different boy.  So much so, in fact, that the next morning (June 24th) when the neuro surgery team came in to look Graham, they announced that his surgery wouldn't need to wait until after the 4th of July, but rather it would take place on the 27th of June.  Graham's nurse, who had dozens of labs to draw, medications to give, and notes to chart, took A LOT of extra time with Graham, and effectively accelerated his recovery by about 2 weeks.  That is the difference between starting school on time and not.  That is two weeks of summer vacation with our kids that we would otherwise never get back.  And in a summer when time is in short supply, an amazing nurse gifted Lindsey and me an extra two weeks. 

There are so many other people that I would like to write about and acknowledge.  The doctor who came in on his day off to give Graham a hug.  The physical therapist who pushed Graham to his limit in every session. The Occupational Therapist who made Graham feel like a super hero for a day.  The speech therapist who skipped mac n cheese and went straight to graham crackers.  The Nurse Practitioner who exhausted herself mentally trying (and succeeding) to figure out how to manage Graham's sodium.  The nurse who challenged the status quo and got Graham to eat for the first time.  The nurse who cared so deeply for Graham and always called him "buh-buh."  The nurse who made Graham smell manly!  And a brain surgeon who performed the perfect surgery.  There are so many people JUST AT THE HOSPITAL that I wish I could adequately thank, and someday I hope to.  But as we leave Children's Medical Center at Dallas, I hope that every person who cared for my son knows that Lindsey and I are grateful for you.  You saved our son's life.  You preserved the quality of it.  You lightened the burden of two parents whose world came tumbling down around them.  God answered our prayers and the prayers of many others through you.

My son Graham is a True Superhero, but so are the people who saved him.  Thank you.

#Prayers4Graham

Unplugged

Graham Update Day 34 (7/12/14)

Short update tonight, but by no means insignificant.  Graham crossed an wonderfully satisfying milestone, he did a great job in therapy, and we are now down to our last full day at Children's Medical Center following more than a month of recovery after Graham's accident.

We started off the day with breakfast and a trip to the downstairs gym for occupational therapy.  Graham's occupational therapist is AMAZING.  In fact, she elevates the definition of that word.  Yesterday she played the Star Wars theme as he entered the gym, gave him the Yoda ribbon you see below, passed him a light saber, and then led him around an obstacle course with pictures of Star Wars and super hero villains all over.  He punched, kicked, and "forced" his way through them all, coming out victorious and VERY happy.

We did more of the same today, but with a twist.  I grabbed "my" light saber as well, and Graham and I battled our way all around the course.  By the end he had completely dismembered me, and I was left on the ground, expelling my last breath, while Graham was free to lift his hands, Rocky Balboa style, in a victory celebration.  Graham did a great job of wielding his light saber with his left hand and his right, and later on in OT he rode the swing all be himself, even letting go of the ropes at times just to mess with us and show us how in control he is.

Graham did amazing in physical therapy as well.  He walked all the way from his room to the gym holding only one of my hands, and at times was even able to take steps without any assistance at all.  We capped his session by putting him on the tricycle and letting him do a lap around the neurosurgery floor.  He was a man on a mission and did an amazing job.

 

 

If you look carefully at the pictures of the trike, and then compare those to the picture of Graham on the swing, you will notice a keep difference.  Do you see it?  Need a hint?  You'll find it in the title of this post.  No tube.  Yes, Graham is unplugged.  He is completely free from monitors and IV drips.  It is amazing to be able to walk Graham around his room and the hospital without pulling an IV pole around with him.  It is yet another hurdle that our little fighter has cleared.

 

There was another significant event that happened today, but it is more fitting (both in terms of subject matter and time this evening) to write about it tomorrow.  But please know that our family is very grateful for all those who continue to pray for and support Graham.  During the last 34 days we have learned anew that God is undeniably good, and that prayer is unbelievably powerful.  Our stay at Children's Medical Center is drawing to a close, but Graham still has a long road ahead.  

 

#Prayers4Graham 

So about that weak right leg...

Graham Update Day 33 (7/11/14)

By now I really should have learned to not put any limits on what I think Graham can do.  No sooner do I recognize something as a hurdle that Graham will "need to clear in the coming weeks" than he is already three steps past it.  We've got some more details on our trip from Children's Medical Center to Baylor Children's House.  And then some general observations about Graham.

Almost from day one, it has been apparent that the trauma to Graham's brain had some effect on the right side of his body.  During his very first exam the morning after the accident just over a month ago, his right side was less responsive to stimuli than his left.  They let us know at the time that paralysis on one side of his body was a possibility, but Graham quickly put those thoughts to rest.  Still, his right side was quite stationary compared to his left, even before his brain surgery two weeks ago.  Since then, Graham has of course started walking, but as he did, that weakness became even more apparent:  Graham has been very solid, fluid, and well-balance when stepping on to his left foot, but weak and wobbly when stepping onto his right.  He has been walking with a bit of a limp - he would push his right foot forward methodically, balancing easily on his left foot, and then as he shifted his weight to his right foot, his right leg would get a little shaky he would quickly pull his left foot up next to his right, not spending a moment longer than necessary on that weak right leg.

But fast forward to this afternoon.  Graham got out of his bed and began walking by holding the hands of his physical therapist.  We've seen him do it many times before, only this time his gate was completely different.  There was no shaky right leg.  Just Graham, casually picking them up and putting them down, one foot in front of the other, the right leg just as stable and strong as the left.  Later on in physical therapy he climbed stairs, and again - he alternated feet perfectly, showing no weakness whatsoever in either leg.  He then repeated the feat, unassisted, between the parallel bars, only this time walking much more briskly.  More amazing progress from our amazing little fighter.

 

At this time last week, we expected that by today Graham would be one or two days removed from his G-Tube surgery, receiving a steady diet of PediaSure directly into his stomach via a small, surgically attached button on his tummy.  Instead, as you may know, Graham yanked the more temporary feeding tube out of his mouth and decided he was going to skip all that nonsense and just start eating himself.  And the boy is doing GREAT!  He's been having more than 150% of the calories the doctors have ordered for him.  And today he feasted on all his favorites - Mac 'n Cheese, cheese pizza, grilled cheese sandwich (notice a trend?), Lucky Charms, PediaSure, Milkshakes, and of course - "Graham" crackers.  He has put on more than 2 pounds since the beginning of the week, and he is absolutely thriving.  He even capped off his lunch by enjoying grape popsicles together with his best buddy and brother - Brode.  And of course, who can resist turning your popsicle into a light saber when someone tries to take a picture of you.

I also mentioned yesterday that Graham was having trouble with two-part commands - he would always do the second, and not the first.  That remained the case this morning with speech therapy, but later on in the evening we tried him again.  At first we would ask him to do something like "touch your cheek.  Then touch your nose."  At first he would do them both at the same time.  This is in of itself was a big improvement over yesterday and even this morning.  But after a few practice rounds, Graham was doing sequential commands with no problem.

Graham does still struggle to express himself when not prompted by the subject matter directly.  For example - if you show him a picture of Darth Vador - he can tell you who it is (this was not the case this morning, it's another development since dinner).  But if you just ask him what his favorite animal is, he will have a really hard time telling you.  It's like the thought just gets stuck in the back of the brain. We all know the feeling - our friend says "Who is that dude that starred in that movie?"  And we KNOW IT!  Only we can't think of the "dude's" name.  That seems to be what is happening with Graham.  You can tell by the look on his face that he knows the answer to the question, he just cannot seem to recall it.  So there are still a few cobwebs to clean out, but at the rate he's going I wouldn't be surprised if he is over that little hurdle by morning.

Graham's speech is also getting better.  He naturally wants to whisper, and we are thoroughly researching how to create this effect in our other children on Sundays during church without inflicting severe brain trauma on them. =)  Graham is spontaneously using his vocal chords more and more though, and when prompted he will speak in his "normal voice" almost whenever we ask him to. 

Speaking of asking Graham to do things, he has developed a very funny little quirk.  He is SO LITERAL!  Whenever we ask him if he CAN do something, his answer is "sure" or "yes."  And that's it.  He doesn't actually do what we ask until we TELL him to do it.

"Graham - can you tell me how old you are?"
"Sure." *silence*

"Graham - can you talk in a loud voice?"
"Yes." *silence*

"Graham - can you tell us the name of the guy in this picture?"
"Sure." *silence*

You get the idea.  Such a funny little guy.  That, combined with his near-constant smile and his jovial nature, make him a joy to be around.  I honestly have never been around a happier person than Graham is right now.  One of my biggest fears a few weeks ago was that as Graham woke up, he would be in pain, be afraid, and be confused.  Some of those are still a possibility going forward, but right now he's just our happy little Graham Hopper.

Yesterday we learned the day of our departure from Children's Medical Center (Monday).  Today we learned the hour:  10:00 am.  They will load him up in the ambulance, Lindsey or I will ride with him, and our next stop will be the Baylor Children's House in downtown Dallas.  It's almost surreal that we are leaving, and that Graham is progressing so fast.  It's what it would be like if you started college as a freshman and had grand plans to become the CEO of a major company some day.  Then, as you finish your final exams at the end of your first semester, Coke calls and offers to make you their CEO.  You are elated!  You are excited!  You're probably a little nervous!  But most of all you can't believe it happened so impossibly fast.  That's  how we feel.  There was a time when we had this week pegged for getting his brain surgery done.  I was prepared mentally to spend the holidays in the  hospital.  And now here we are leaving, set to be home in a matter of weeks.  It's a miracle.  It's the result of some heroic people here at the hospital, a loving Heavenly Father, prayers and support from wonderful people everywhere, and a little fighter with a huge smile on his face who just won't quit.

#Prayers4Graham