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