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.