Home Tomorrow

Graham Update Day 87

One thing Lindsey and I have consistently tried to do is help Graham understand why he is in a hospital.  He now understands that he was in an accident.  That a car ran over his head.  That he has been in the hospital getting better.  We've also told him that we share his story on the computer, and that lots of people have been praying for him to get better.

Last week Graham asked how badly he got hurt by the car.  So we slowly, and with lots of warning, showed him some pictures from early on in his recovery.  We emphasized how great it was that "Heavenly Father helped you get all better!"  and that so many people praying for him helped him get better quicker.  At that point, Graham asked the following questions:

"Have all the people praying for me seen my pictures?"

No Grahammy, they haven't.

"Why not?"

We didn't want to show everyone pictures of you without your permission.  Do you want them to see the pictures

"Yes!"

Why do you want them to see the pictures?

"So they can see how much better Heavenly Father made me!"

So after prayerful consideration, we have decided to honer Graham's wishes and let you all see how much better Heavenly Father has made Graham.  Just a warning - some of the pictures in the video are graphic.

Coming Home and a Big Challenge Ahead

Graham Update Day 83

Graham continues to make great progress in his therapy.  He's doing so well, in fact, that we finally have a discharge date.  We also have a very big challenge ahead of us as we try to manage his diabetes insipidus, a condition that he will likely have for the rest of his life as a result of his accident.  I'll try to explain the cause of it, as well as the unique challenge that Graham faces.

First, the big news: Graham is coming home next Friday!!  Yes, on September 5, 2014, just 88 days after getting his head run over by an SUV, we will finally be able to bring Graham home.  Graham asks everyday if we can go home, and we certainly share his anxiousness.  It has been so long since we have been at home as a family.  We long to hear them laugh, play, fight, and argue.  We'll take the good with bad, just as long as we are together.  It has been such a long journey, and in recent weeks it has been particularly wearisome.  And while Graham's homecoming is exciting, it does pose a VERY UNIQUE challenge...

Central diabetes insipidus only affects 1 in 33,000 people in the United States.  For those math majors out there, that means there are less than 10,000 people in the country who have Graham's disease.  Assuming the averages hold, there would be less than 250 in DFW with the condition, and less than 50 in the entire state of Idaho.  So yeah, it's RARE.

The hypothalamus produces a hormone called vasopressin.  That hormone is then stored in and released by the pituitary gland, and is used to help the body know when to pee.  Graham's hypothalamus was damaged, and he no longer produces the hormone.  That means without medication (or when his medication wears off), he "breaks through" and dumps urine at an alarming rate.  When he pees so frequently, the fluids in his body become more saturated, causing his sodium to get high.  Unchecked, it would get dangerously high.

Most people with diabetes insipidus could actually manage without any medication at all, although the non-stop peeing would get old.  As their fluids drop and their sodium rises, they would get REALLY thirsty and drink.  The problem for Graham is of the fewer than  10,000 Americans with the disease, he is one of the very few who does not have a working thirst mechanism.  So when Graham gets to a point where you or I would just about be willing to drink our own urine, Graham just carries on, not feeling any thirst at all. 

In a hospital setting they can check his sodium twice a day and adjust his dose accordingly.  At home, we don't have that option.  There is a company called Abbot that makes a home sodium meter called that iStat, similar to a blood sugar meter that diabetics use.  There problem is they have only made 50, all the meters are in use, there is a waiting list to use them, and they are no longer accepting people on the waiting list.  Furthermore, the machine is not FDA approved, which means they cannot mass-produce it.  And, likely due to the fact that less than 10,000 people in the country have diabetes insipidus, they don't even have plans to get the machine FDA approved or ever mass produce it.  So unless someone knows the CEO of Abbot or has another way to check Graham's sodium level at home, we will be playing a very critical guessing game for years to come.

And it is a guessing game, by the way.  They have literally changed the dose of Graham's medication at least twice per week for the last 2 months to try to get it in the right place.  They have gone from shots to tablets.  From giving doses twice a day to giving doses three times a day.  No matter what they do, he always needs a different dose.  In a normal patient it's not too big of an issue - when they dump urine at home - give them a dose and have them drink till they are not thirsty anymore.  But Graham does not thirst.  So the only thing we can do is measure all his fluid output and try our best to replace it everyday and hope that he has enough fluid.  But not TOO much - if we overmedicate Graham he will retain too much water and his sodium can also go the other way and get dangerously low.

So managing Graham's condition will be challenging.  But we are hopeful that in the coming week his doctors will equip us with some tools to help us keep it in check.  And in the grand scheme of things, if this is the biggest challenge we face as a result of Graham's accident - sign me up!  His recovery is nothing short of a miracle, and we are so excited for upcoming milestone.  Thank you all for all your prayers - we know the road would have been much tougher, if impossible, with them.

Home Stretch

Graham Update Day 77

The big event this past week actually turned out to be a non-event, which I will do my best to explain.  I'll also give a general overview of where Graham is at in terms of his therapy, and then outline the plan moving forward.

As many of you already know, Graham flew to Houston this week for what we thought was going to be an endoscopic surgery to plug up the crack in the base of his skull.  An MRI revealed a few weeks ago revealed that there was a leak from that crack into the sphenoid sinus, putting Graham at risk for future problems, including meningitis.

The view from Graham's room in Houston

When we arrived at Houston, the doctors there checked him out and had him do a few exercises to expose any fluid that might have been leaking.  He put his head between his knees and did other similar exercises that should have put pressure on his head and made any leaking fluid manifest itself through his ears or nose.  But that didn't happen.

As a result, the doctors there came to the conclusion that Graham did not need surgery, and here is why:

1. 90% of patients who have a traumatic brain injury like Graham, where cerebrospinal fluid (CSF) leaks out the nose and ears as it did with Graham in the ICU, develop meningitis - even while being placed on aggressive antibiotics.  The fact that Graham has been off antibiotics for weeks, and has not developed meningitis, tells the doctors that he is currently a VERY low risk to develop meningitis.  In other words, if he had a risky leak, he would be infected already.
2. Patients who have CSF leaks and then recover from them almost NEVER re-develop a CSF leak after this amount of time. 
3. If CSF is not currently leaking, that means he is "plugged up."  And even with the crack in the base of his skull present, that means the opening into the sinus presents no more risk of meningitis than other openings in our heads - like our ears.
4. With parental awareness of the signs of meningitis, his doctor in Houston said it is an easy thing to treat, provided you catch it early.  Most people have problems with it because they are not aware of what it could be, and it does not get diagnosed until well after its onset.  In Graham's situation, that shouldn't be the case.  Lindsey and I will be on the lookout!

It is definitely a nice second opinion to have.  To be clear, his doctors here still feel like he needs the surgery.  With that said, they do not feel it is emergent, and agree that the risk to Graham of going without it is fairly low.  So it really boils down to this:  the "Dallas Doctors" feel like the risk of surgery is lower than the risk of an open crack in the base of his skull.  The Houston doctors feel like it is riskier for Graham to be anesthetized and operated upon than it is for him to walk around in his present state.

So what will we do?  The short answer is "we don't know for sure."  We are going to finish out Graham's stint in rehab as if he doesn't need an operation.  We will follow up with Dr. Braga after discharge, gain a better understanding of exactly what surgical options are out there (and their associated risks), and then make an informed decision where we are not under some artificial deadline.  We will do what we truly believe is in Graham's best interest, long-term.

Medically, Graham is in a good place.  The diabetes insipidous that he contracted as a result of his accident (remember all his sodium problems?) has been largely under control.  A very significant change - Graham's stomach no longer looks like this:

The boy was a human pin-cushion

Graham no longer gets shots to administer his DDAVP.  Instead, he takes pills.  Early on during his ICU stay that obviously wasn't an option, since Graham was unable to eat or swallow.  And many endocrinologists don't like to give the drug through pills because they feel like you can't see changes in the patient quick enough, making it difficult to know how to adjust the dose.  In Graham's case though, the more gradual changes in his body chemistry has been a big blessing.

DDAVP takes the place of a hormone that is produced in your hypothalamus and then stored in and released by your pituitary gland.  It effectively works as your bladder valve.  Without it, Graham will pee unceasingly.  When he would get shots of DDAVP, it would immediately close "the valve" and Graham would not pee for hours and hours and hours, no matter how much he drank.  Then, as the drug wore off - all at once - the floodgates were open and Graham turned into a flowing garden hose south of the border.  Since being on the pill, however, his urine flow has been much more normal; peeing gradually throughout the day and then "breaking through" more slowly as the drug wears off .  It makes the idea of managing his DI at home seem much less daunting to Lindsey and me.

Physically, Graham can just about do it all.  Although he hasn't been officially cleared to walk around with out someone holding his hand yet, he can.  At times when he forgets "the rules" he can take off unassisted, much to the dismay of Lindsey or myself.  So far during his "escapes" or at other times when we have been by his side, he has taken off on a run, climbed a playground toy and gone down a slide, and done a full 360 spin while holding his light saber in his hand.  He can bend over and pick things up, and when he does stumble or trip he always catches himself.  So while Graham won't be able to participate in P.E. or normal recess for at least a year, physically he should be able to do lots of things to keep himself active and entertained.

Mentally, Graham is making great strides as well.  His attention span and focus have improved dramatically.  So has his ability to recall information.  His short term memory still isn't back to 100%, but it is improving and is in a manageable state.   For example - if you I ate a piece of cake for breakfast this morning, we would be able to recall it later in the day.  Graham typically doesn't remember those sort of details.  However, if you tell him several times at breakfast the thing he needs to remember, he will.  Alternatively, if you queue him and give him hints, he will be able to draw those details from his memory.  So all the appropriate connections seem to be there in his brain, they just need continued exercise.

Graham's eyesight is another matter.  While not severed completely, he definitely has damage to the optic nerve in his right eye, as he still cannot sense light with it.  He also has damage to the third cerebral nerve in that eye, meaning he cannot move his eyeball and has very limited ability to even open that eyelid.  Graham has asked us about it from time to time, and we tell him that we just need to keep praying that it gets better, but it might not - and that's OK.  That's why God gave us two eyes - if anything happens to one, we have another for backup. 

The good news is that Graham can actually see better out of his left eye now than he could before his accident.  His vision was about 20/200 in that eye before the accident, and is now 20/100.  There are certain difficulties that come with losing the vision in your dominant eye the way Graham has.  The good news is that his physical therapist at Children's Medical Center in Dallas said that one of the best ways to retrain a weak eye to become dominant is to play golf.  So golf therapy it is!

In the upcoming week Graham will actually be enrolled in the Fort Worth Independent School district, and a teacher assigned to the hospital will be Graham's teacher until he is discharged.  She will perform grade-level testing on him and then instruct him accordingly, just like if he was going to school back in McKinney.  A neuropsychiatrist will perform tests on him as well, and then when he is discharged his teacher here and one of his therapists will meet with his teacher and principal in McKinney to help make sure his needs are met when he gets back to his normal classroom, which should be some time in the next two weeks if all continues to go well.

We are so blessed that Graham has survived and come along as far as he has.  If, during the week after Graham's accident, you would have described this level of recovery to Lindsey and me, and then asked 1000 times if we would "take it," the answer would have been yes 1000 times.  He is doing better than anyone imagined.  He is walking, talking, laughing evidence of the power of prayer and the proof of God's love for us.  Thank you all for praying for Graham - it has worked and continues to do so.

Houston Bound??

Graham Update Day 71

Thank-you's, apologies, a close call, and a mad dash to the finish.  Lots to talk about in today's blog as Graham's next (praying for it to be the last!) surgery comes together...

First of all, thank you to all those who reached out to Lindsey and me with recommendations of people who could potentially take care of our little Super Hero.  Dozens of people contacted us offering up connections, introductions, and even your homes to us.  You are such wonderful people and your thoughtfulness and selflessness do not go unnoticed.  It really touches us that so many of you are so willing to help Graham at a moment's notice.

Next - my apologies for keeping everyone in the dark for the last week.  Remember though that in general no news is good news  Please also know that there was a method to my madness. 

At the beginning of last week we were waiting for Graham's neurosurgery team in Dallas to pound the pavement and find someone they were comfortable with to do an endoscopic surgery to repair the leaking fracture in the base of Graham's skull.  At the same time, my cousin Nick connected us with a neurosurgeon at Texas Children's Hospital in Houston - Dr. William Whitehead.  Dr. Whitehead agreed last week to see us this Tuesday for a clinical appointment, as well as tentatively schedule a surgery for the following day, which he would perform with Dr. Carla Giannoni - an ENT surgeon.  That they were both willing and able to see us on such notice is nothing short of a miracle.  The stars were truly in line for that option to even be a possibility.

Texas Children's is one of the best hospitals in the world and this was certainly a wonderful option, except for the travel.  We had hoped that our surgery team in Dallas would be able to find someone just as good who could operate just as soon, but the short story is that it did not happen.  So late last week, assuming transport could be arranged (a big "if"), assuming insurance would preapprove things (a bigger "if") and assuming schedules would hold (the biggest "if" of all), we determined that we would go to Houston for Graham to have his surgery done.

At first the plan was very simple - discharge from Cook Children's on Monday (today) with a couple days worth of medication, then Lindsey and I would drive Graham down, we would see Dr. Whitehead at clinic, stay at a hotel, and then show up for surgery and admittance to the hospital on Wednesday morning.  The alternative was a hospital-to-hospital transfer, immediate admittance, a visit with Dr. Whitehead during his normal "rounds." Two potential plans of equal merit.  Just some paperwork to get in order. The weekend brought trouble though.

To start - Graham started having "dizzy" spells.  He said the room would spin and he started acting confused like he didn't know where he was.  This was a first and obviously very concerning, so it was all hands on deck.  They ordered an MRI, which thankfully turned up normal, and began giving him an antihistamine to help with his sinuses - the suspected source of the problem. 

We entered the weekend with these dizzy spells, and nothing "official" on the Cook end of the equation.  Insurance was not in the loop, transport was not confirmed, and because of that we didn't know which plan to follow in order to see Dr. Whitehead.   The good news was we had the weekend to figure things out.  The bad news was that like this don't happen on the weekend.  So we were set to leave Monday (today) but we wouldn't know if insurance would authorize it, or anything for that matter, until... Monday (today).  And this morning, everything was put in jeopardy by our old nemesis:  Graham's sodium.

They check his sodium twice a day at 6:00.  This morning it was 153 - 4 points higher than what is considered acceptable limits.  And as far a the hospital is concerned - if your patient isn't well, you don't discharge - even to another hospital.  In Graham's case that would be a deal-breaker for the week.  No transport today.  No clinical meeting tomorrow.  No surgery on Wednesday.  And who knows when those stars would align again?  Our best option in Dallas wouldn't be available until October, roughly.  And in addition to the sodium, there was the issue of the dizzy-spells.  Was it really safe for Lindsey and I to transport Graham ourselves, given the recent changes in his health?  We told the doctors this morning that we didn't think it was.

So we were on the clock to get his transport figured out and his sodium back in line:  at 8:00 we found out that if Graham's sodium was not within normal limits (under 150) by 11:00, he would not be able to leave today, and everything would be off.  They "prescribed" him an additional 8 ounces of fluid to help bring his sodium down, but when I checked his urine output (yes, we measure every one) from the time of his sodium check, I saw even with the additional 8 ounces, he would still be fluid-negative on the day.  So Lindsey and I "ordered" him to drink an additional 16 ounces instead of 8.  And as I was walking down the hall while Graham was in PT, I felt strongly that I needed to tell his therapist to push the liquids on Graham, so they would have time to enter his bloodstream.  So I interrupted his therapy, she obliged, and together we got Graham to drink a total of 31 ounces by 10:30.  They poked his finger at 10:45, drew a small vial of blood, and sent it to the lab.

The next 45 minutes were excruciating.  Our amazing case manager and nurse practitioner continued to work non-stop to get everything coordinated, and yet this simple sodium lab could blow the whole thing up.  At 11:30 it came back:  Graham's sodium was 149.  Not a point to spare.  But game on!

From then on things slowly started to come together.  Graham's doctors agreed that a parent-transport would be unsafe, and everyone started working on a hospital to hospital transport.  Dr. Whitehead agreed to officially admit Graham today. Insurance approved the transport - but not by vehicle.  They felt it was to long of a drive from Fort Worth to Houston.  So transport would be by plane.  Cook's EMT Jet was available, and got approved by insurance.  Finally, a bed opened at Cook Children's, and at 6:00 this evening Graham and Lindsey took off and made their way to Houston.  I'll join them there late tomorrow night, and we'll be there for Graham when he goes in for surgery Wednesday morning.

Graham's team of 5 loading him on the plan while mom snaps some photos

Load him up!

 



And time to relax



This last week has been full of uncertainly and full of stress.  But it was more than worth it.  Graham is resting easy with his mom at his side at one of the best hospitals in the world.  He is being spared from getting the top of his skull removed and enduring a very risky and invasive surgery.  And somehow, someway, everything moved at medicine's equivalent of light speed to get Graham where he needs to be.  Henry B. Eyring said that nothing will surprise us more when we leave this life than to see just how familiar God is to us, and "just how much he was involved in our everyday lives."  It would be easy to call the happenings of the last week a series of fortunate events.  But I know they are the well-thought-out plan of a loving God and the answer to lots of prayers.  The fact that Graham is in Houston now?  Just add it to a growing list of miracles that he has lived through during the last two and a half months.  Thank you all for your prayers, and I'll keep you updated until his surgery Wednesday and throughout the week.

So about that brain surgery...

Graham Update Day 65 (8/12/14)

For those that have been following Graham's progress, you know that today is the day he was scheduled to be transported back to Children's Medical Center of Dallas to have his brain surgery done.  That's not happening - for now.

Dr. Braga called me late last week to let me know that he thought there might be someone in Dallas who could repair the leak that goes from the base of Graham's skull through into the sphenoid sinus by going in endoscopically through the nose as opposed to opening Graham's skull up again.  His plan was to try to find that "someone" over the weekend and determine if the fix might be possible.  It's looking more and more like it will be.  My cousin actually connected us with a pediatric neurosurgeon at Texas Children's Hospital in Houston who does basilar skull repairs endoscopically.  He has agreed to set an appointment to meet with us, review Graham's records, and perform the surgery the following day.  I was texting Dr. Braga today and he said he is close to having someone in town available to do it, and should be able to let me know tomorrow.

So the short story is that Graham's surgery tomorrow has been postponed/cancelled.  We are continuing on as normal here at Cook Children's Hospital in Fort Wort.  And one way or another - either in Houston or Dallas - it looks like we will be able to get Graham all fixed up without opening up his skull and performing a VERY invasive surgery.  It is a huge relief (knock on wood) and an immense blessing.  I'm so grateful that Dr. Braga (And Dr. Honeycutt here) looked at Graham's case with Graham's best interest in mind.  They worked without any egos and asked the question - what is best for Graham? - and set to work to make it happen.  I know that for me personally, when there is something that crosses my path at work that needs to be down, I put my head down and do it myself.  I'm grateful that there are people in the world who DON'T think like I do all the time.

We continue to be extremely impressed with everyone on the rehab floor at Cook Children's.  They were the ones who caught the leak in Graham's skull in the first place.  Then yesterday in one of Graham's therapy sessions, his therapist noticed that something with Graham was just a little "off."  He seemed a little dazed and confused.  Unsure of where he was.  She could have powered through his session and moved on to the next kid, but instead she alerted the medical staff.

Within minutes they were drawing blood for labs, bringing in nurses to do exams, and scheduling an MRI.  It was nerve racking to say the least, but it turned out to be much-ado about nothing. His labs didn't turn up anything abnormal, and his MRI results actually came with a pleasant surprise.  A nurse practitioner was reviewing the notes on the MRI with me this morning, and nothing looks out of place.  In fact, the MRI notes indicated that his brain shows a lot of healing since his last MRI, which took place less than two weeks ago.  She said he is an amazing boy and that his healing really is a thing of wonder.

So we will be in surgical limbo for a while, but that's OK.  We are 100% confident that the right choices are being made, and we are OK with waiting for a while to make sure things are done in the best way possible.  It sames like only a few days ago that we were in the ICU asking when Graham's first surgery would be, and the answer just kept coming back "1-2 weeks."  That surgery turned out to be a huge success, and it taught us to trust and allow for the time it takes to make sure things are well-planned and properly coordinated.

Thank you all for your continued prayers and support.  Many of you reached out to us to offer advice and recommendations for people who could help with Graham's surgery.  We are so grateful for you and grateful to know that if for some reason we couldn't get things done in Texas, that there are other places we could go to get Graham the treatment he needs.  We are so blessed to have such great friends, family, and others who care so much for our sweet little Graham.  Thank you.

Prayers By Graham

Graham Update Day 63 (8/10/14)

Graham's accident is a parent's worst nightmare.  When I saw him laying in the neighbor's driveway after his head was run over, I cannot describe the horror, fear, and anguish that I felt.  But from that time, with a lot of prayer, a lot of love, and many blessings  from our Heavenly Father, our burden as a family has been lightened, we have been comforted, and Graham has been blessed with a miraculous recovery.  Don't get me wrong - I wouldn't wish this on anyone, and I am not strong enough to say I would do it again if faced with the choice to do it over.  I absolutely would not.  But we are better as people for having lived through this. We have had so many deep spiritual experiences that no matter the end result, our family is on a better trajectory now than we were before, both as individuals and together.  And leading the way, as always, is Graham.  His first week in therapy here at Cook Children's, he paused in the middle of his exercises to ask Heavenly Father for help.  He is an amazing example of faith.  And last night, he proved again that he is faithful, charitable, and wise beyond his six years.

I am not the best father in the world.  Our scripture reading is inconsistent at best.  There are plenty of people who are more involved with their kids.  Who play more with their kids.  Who are better teachers to their kids.  But I try.  And one thing of which I have made a point in teaching my kids is to pray "with feeling."  In other words, when my kids pray I teach them not to go through the motions and say repetitive words.  But that when they pray they should be feeling - a lot - and speaking accordingly.  So whenever I tuck them in at night I always remind them - "Don't forget to pray...." and they respond "with feeling!"

So last night I was sitting in a chair next to Graham messing around on the computer while he watched a movie.  Out of nowhere, Graham said:

"Dad, please oh please can we say a prayer with feeling?"

When a six year-old asks for anything by saying "please oh please," the answer is yes.  So I obliged and knelt down next to his bed.  And this was Graham's Prayer:

"Dear Heavenly Father,
Please bless everyone to know that Satan is real.  And Heavenly Father, please protect our spirits.  In the name of Jesus Christ, Amen."

Very short.  Very sweet.  Very profound.  Things that I have, unfortunately, never directly taught him as a father.  In a world today that teaches that there is no wrong, that everything short of murder and abuse is justified, it is amazing that a six-year old boy recognizes that:
(1) there is a real influence out there that wishes us bad.  The great deceiver wants us to make choices that will make us unhappy in this life and in the life to come.    And
(2) That there is a more powerful influence out there who is just as real.  He is our Heavenly Father.  He loves us, and he has the power to protect us.  He won't always protect our bodies from accidents, illness, and the choices that others make with their agency.  But he will always protect our spirits. He will always help us to learn, become better, and make the most of the things that happen to us in life.  He WILL protect our spirits. Those can be untouchable if we choose, and if we ask.

This morning Graham's prayer was again equal parts simple, sweet, and sincere:

"Dear Heavenly Father,
Please bless everyone to have a good and pleasant summer.  In The name of Jesus Christ, Amen."

Here is a boy who is undoubtedly getting stir crazy.  He asks "can we please go back home to McKinney, Texas?" several times each day.  And yet his morning prayer reflects his nature - always concerned with the welfare of others, while ultimately content with the cards that life has dealt to him.  So to everyone readying - please have a good and pleasant summer!

I am so grateful that, like Graham, so many of you have taken the time to pray for someone else.  You have offered up your feelings and so much more for Graham and our family.  And I am very grateful that God has preserved Graham's life, because he is an amazing little boy, and I really feel like the world is a better place with him in it.

Brain Surgery is Scheduled

Graham Update Day 62 (8/9/14)

It's hard to believe that 2 months ago today Graham's head was run over and crushed by an SUV.  He has come so far, and continues to get a little bit better every day.  He does have another brain surgery coming up, and we are hopeful that he will be able to maintain his momentum after the operation.  In this update I'll discuss some of the progress that he is making, as well as discuss the surgery and one possible alternative to opening up Graham's skull again which may arise....

In terms of Graham's therapy, he is making huge strides, especially with his short-term memory.  10 days ago he was really "10-second-Tommy," meaning he would pretty much forget anything that happened even a short while before.  With some drilling and pressure he would remember things, but a question as simple as "what did you do in gym (that's what we call physical therapy) five minutes ago" was impossible for him to answer.  He didn't remember his therapists names, and unless you had really drilled it into him, he certainly couldn't remember anything from the day before.

All that has changed now.  He knows his therapists by name.  He remembers the name of one of his little friends and fellow-patients here.  Today he came back from occupational therapy and said "Dad!  We had a water gun war!"  It's very relieving to see him recover in that respect, as his short term memory, probably more than anything else at this point, will go a long way towards him returning to and succeeding in school.  Another good sign?  His reaction-time and hand-eye coordination, captured in this picture below.

Graham is making great strides physically as well. When Graham first arrived at Cook Children's, he was on orders to not walk at all unless someone was holding on to the gate-belt around his waste.  Last week that changed - he is now free to walk around simply holding somebody's hand.  And were it not for the impending surgery, Graham's physical therapist said she would release him for "standby" walking, meaning he would be free to walk completely unassisted as long as someone was close by.  He can bend over and pick things up off the floor without falling - another huge improvement.

Graham senses the improvement as well.  For a while he would talk about how he was in the hospital "to find get his balance back."  He was reluctant to walk without help.  Now he is constantly trying to release our hand when walking, and occasionally when he gets excited he even tries to run.

The big mountain ahead of us now is Graham's next brain surgery.  He is leaking fluid into his "dirty" sphenoid sinus (pictured below), which means he is at great risk for bacteria to find its way from the sphenoid sinus back to his brain, causing meningitis.  So they are going in to plug the hole from the base of his skull into his sinus.  I'm no radiologist, but I think you can even see the hole in the image of Graham's brain below. (Doctors feel free to laugh at me if I am wrong)

Dr. Braga, who did Graham's first surgery, will perform this one as well.  The neurosurgeon here, Dr. Honeycutt (awesome man), said that there are certain advantages to Dr. Braga doing it, so that's what we will do.  He will open Graham's skull along his existing scar-line - a wave-like incision from ear to ear across the top of Graham's head.  He will then remove the top of Graham's skull, push on the brain enough to expose the leak, and plug it up - likely with a plate.

It will be significantly more "invasive" that Graham's first surgery, so naturally we are praying extra hard that all goes well.  But there is a very small chance that the surgery won't even happen.  I'll explain:

When Dr. Braga first looked at Graham's CT Scans and MRIs from here at cook, he agreed with Dr. Honeycutt that the surgery needed to be done and scheduled it.  In looking back at the images and in discussing it with his colleagues, however, he decided there was a chance that maybe they would not need to open up Graham's skull at all, but that perhaps an Ear/Nose/Throat (ENT) surgeon could plug the leak by going in through the nose lapriscopically.  He said there used to be a doctor at Children's who he thinks could do it, but that doctor is not there anymore.  So Dr. Braga and the other brain surgeons in his group are going to see if there is someone else in DFW who feels they would have a high probability of success in plugging Graham's leak lapriscopically.  If they do, then we will start consulting with THAT surgeon and will inevitably have to transfer to a different hospital for the surgery, and then come back to Cook Children's again for rehab.  I discussed this with my sister, and she brought up a great point - what if there isn't someone who could do it in DFW, but there is in Houston?  or New York?  I know from talking to the EMT who brought Graham from Children's to Cook that they transport internationally, so perhaps there is a doctor out there somewhere who could perform the operation with a high likelihood of success. If there is, I know we can get him there.  So if any of you know any ENT surgeon-gurus who want to look at some CT scans and MRIs, feel free to let me know.  =)

So unless someone comes forth from the woodwork and says "I can plug up that leak in the base of Graham's skull by going in through his nose!" surgery will be Wednesday. Thank you all for your prayers - we know it is a combination of expert medicine and a loving Heavenly Father who have brought Graham this far. On Wednesday Graham faces his most invasive and risky surgery yet , so we will be praying for steady hands and no complications.

Still waiting for surgery details...

Graham Update Day 58 (8/5/14)

Quick update tonight as we continue to wait on details of when and where Graham's next brain surgery will be.  We do have a few interesting details to share....

This next surgery will be more invasive than the previous one.  Putting a plate under the brain and securing it in the base of the skull is pretty tricky.  Unlike in cartoons, the brain doesn't lift out of the skull very easily. One positive is that they will be able to use the same incision line as before, so hopefully the scarring is at a minimum.

We are not all that sure yet as to how the two surgeons' approaches will differ.  About the only thing we know now is that the Surgeon at Cook Children's would use titanium plates, while Dr. Braga at Children's Medical Center uses plates that dissolve over the course of about a year.

We asked the therapists today "If Graham did NOT have to get a surgery done, how much longer do you estimate he would remain here at the hospital?"  Answer: 3-4 weeks.  So with the surgery, we are probably looking at mid- to late-September before Graham can come home.  That is obviously a lot longer than we thought.  Back when we went to the first rehab place they estimated Graham's stay at that time would be 1-2 weeks, would would have put us home by now.   Cook Children's takes a different approach, obviously.  They base their decision on when to discharge Graham on two factors:  Is it safe for Graham to be home, and is he progressing in his rehab or has he plateaued?  The good news is that Graham is making great strides both mentally and physically, which leads them to think that a longer stay will be advantageous to him.

We are so blessed that Graham has come as far as he has.  We know he will fight through this, and we know that we are being blessed tremendously by God because of all those who pray for him.  Thank you so much, and we hope to have more to report on soon!

Surgery Details, Memories, and a Big Race

Graham Update Day 55 (8/2/14)

In response to receiving MANY questions by phone, text, email, and social media, I wanted to do a very quick update tonight to share all the details that we know about Graham's next brain surgery.  I'll also share some interesting tidbits about memories that Graham is recalling, and mention a big race that is coming up on October 4th...

So here is what we know about Graham's surgery - NOT MUCH!

• The neurosurgeon here, Dr. Honeycutt, discussed his thoughts on the surgery with us on Thursday evening, asking us then for our permission to request that Dr. Braga perform the surgery.  He text Dr. Braga that same night, and Dr. Braga, who was in surgery all day yesterday, let him know that he would review the MRI and CT scans as soon as he could.  He is, of course, dependent on FedEx to deliver those images (they are just slightly too big for an email), and will be reviewing them this weekend.  To that end, we expect to have more details late Monday or early Tuesday.
• With that said, Dr. Honeycutt's preference is to have the surgery done next week.  I personally will be somewhat surprised if that happens, given the fact that this is not an emergent procedure.
• As far as how they will stop a leak into Graham's sphenoid sinus - it could be anything from an intracranial soft tissue transplant - similar to how Dr. Braga shored up the leak into Graham's frontal sinus, or it could be inserting a metal plate into the base of his skull to cover the fracture.  The latter is what Dr. Honeycutt discussed with us, but nothing is set in stone.
• They will use the same incision line in Graham's scalp as before.  We do not know yet how they will get into the brain, but typically they remove the top of the skull.

* * * * *

Earlier this week I tested Graham's short-term memory by asking him to remember 3 words - Ball.  Lion.  Carrot.  I actually tried that one time before - it was shortly after his first surgery, around the 4th of July, and I asked him to remember the words ball, lion, and PLATE.  (Don't ask my balls and lions keep coming to mind!).  I then told him a 30-second story, and asked him to recall the words.  He did - ball, lion, plate - and I never mentioned THAT set of words again.

I bring that up because Graham can still recall the words - ball, lion, carrot - that I told him to remember earlier this week.  Only twice has he incorrectly recalled the words, and when he did he said "ball, lion, PLATE," recalling what I told him only once up on the Neurosurgery Floor at Children's hospital.  It was the first thing that Graham actively recalled from his memory that came from his stay at Children's.  But it hasn't been the only one.  On the way back from his CT scan, the nurse asked Graham what floor he was on.  We are on the fourth floor here.  But Graham's answer?  D-10 - the floor of his room back on the Neurosurgery floor at Children's.  But here is where it gets downright crazy. I went back and read Graham's journal to get these details correct:

On June 23, 14 days after Graham's accident and 4 days before his first brain surgery, Graham was not walking.  He had said a handful of words, and the most robust physical activity he had performed was to sit up with A LOT of assistance on the edge of his bed.  He could occasionally communicate by giving a thumbs up.  He'd had his ventilator removed just 4 days prior, and he still had his feeding tube in.  On June 23, Graham had the EVD, or brain drain, removed from his skull. 

Fast forward to today - Lindsey asked Graham if he was in any pain.  He said "a little."  Lindsey asked where the pain was.  His response: "You know - where my IV was.  In my head," and he pointed to the area where his EVD had been.  It makes me wonder - what other memories, contained deep in the recesses of his traumatized brain, will manifest themselves in the coming days, weeks, and months? 

So Graham's memory is improving.  He is becoming more and more like himself - modest around the nurses, scared of heights and scared to be alone.  And we also had a first today: while watching Despicable Me 2, Graham laughed for this first time since his accident.  And it wasn't a chuckle.  It was a full-on, silly, giggly, 6 year-old belly laugh.  Graham is normally a fairly quiet guy.  He likes to sit and play Legos or chill out and chat, like we did today:

But occasionally Graham likes to get silly to-the-max, and seeing that side of him again was downright glorious.

* * * * *

Some amazing people are doing some amazing things for Graham.  There was Prayers4Graham night at Chili's in Boise.  Countless kids doing fundraisers.  Our ward at church being our rock.  Amazing friends setting up a fund for his recovery.  A sports talk radio host doing a segment about Graham, and family traveling from far across the country to be with us and help out at home.  Thousands of people praying for his recovery. 

Another person has done something amazing- she has gotten together with Cooper Fitness in McKinney Texas and organized a 5k and Fun Run for Graham.  It's called the Little Fighter 5k, and you can read all about it here:

https://www.facebook.com/pages/Little-Fighter-5K-1-Mile-Fun-Run-Fundraiser/655524297876867

Thank you Kelly for doing this for Graham, and thank you to so many who help us in so many ways.  We have an unpayable debt to God and to the world.  Thank you from the bottom of my heart.

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