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.