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.