This morning was our follow-up with Dell’s craniofacial clinic (read more about how we got here). We arrived and did the usual things (weight, measure his head, fill out the same paperwork we filled out 3 weeks ago, try to get him to lay still to get his height, take pictures of his head) and then waited patiently (or not!) for the team to arrive. I was humored that Daddy P got to experience the “fun” of G at a doctor’s office – as he described it “he hunkers down in a shell and just screams”….yup, that’s about it. 😉
The nurse came in to prepare us that there were 6 physicians, an intern, and a nurse who would all walk into the room shortly, and it doesn’t mean anything, it’s just the way the clinic works. Mind you, we are in a usual small exam room, so, when all these people did storm the room, we felt much better having the heads up. There was the neurosurgeon, the craniofacial plastic surgeon, pediatrician, geneticist, and other doctors whose roles I don’t even know (I counted 9 people in the room, 12 including our family)! The neurosurgeon (Dr. George) and plastic surgeon (Dr. Kelley) led the conversation, which unfortunately began with, “so…has a doctor ever been through MRI results with you? What do you know about your son’s condition?” Yes, we had been through MRI results before, but now we are on the defense that you are going to lay something BIG on us that we don’t know yet?!? We talked about his Agenesis of the Corpus Collosum (ACC) and the neurosurgeon reflected where the Corpus Collosum is and how we can see it is missing, and in addition, there are usually 4 or 5 other connectors that pass info between the right and left spheres (in addition to the CC), and those were all missing as well. That wasn’t something we necessarily knew, but he reflected it is consistent with ACC, so not shocking. He started talking about white and gray matter and Daddy P immediately assumed we were being told G has a brain tumor, because that is where Daddy P’s anxiety always takes him….however, he was just confirming that things look like they should. 🙂 Then he showed us how the bumps of the brain are reflected around the perimeter of the MRI, but look at this, the bumps are RIGHT up against the skull. At that point we were then shown where there IS room (blanks space in the MRI!) in the front and back of the skull for his brain to grow into, but the sides were at max capacity and the brain is right against the skull.
He then pulled up the CT scan which is where we see the skull, and points out the sutures, which is where the skull expands to allow for brain growth. We see all of them except one, the sagittal suture. Yup, there it is, confirmation of the issue. Erg. Because his head has always been shaped this way, it was probably closed even at birth, even though it shouldn’t close until early adulthood.
Additionally, there are spots where they can see the bone is thinner on the sides – where the brain is pushing up against it, another indication of being out of room. As an aside, at this point, I actually came to the conclusion on my own of what the thinner bone meant which led to a conversation that I might as well be the neurosurgeon, they were getting me some cards printed up, Dr. George passed me his phone to take over, and it added some much needed humor in an anxiety filled, people packed room. 🙂
At this point, both doctors expressed that because of the severity of the surgery, they don’t recommend jumping to this, and would prefer to monitor the pressure in G’s brain to determine if surgery is needed. This will involve drilling a hole (the size of the tip of a pen) into his skull and placing a very thin wire into his skull, touching his brain. The wire is connected to a machine and will allow the team to monitor his brain pressure. For a variety of reasons there could be false results, so they monitor G for 2 nights and 2 days in the hospital. With this info, we will then know if the pressure is high we need to do surgery sooner rather than later, but if it is not,we discuss – maybe we monitor again in a period of time, maybe we do nothing. If surgery is necessary, there are a variety of ways they can expand his skull – usually this surgery is done in infants, so when they expand the skull, it tells the skull to create more bone and all is well. After 1.5 years of age however, the skull won’t create bone quickly enough so this becomes an issue. They had previously discussed taking bone out of his leg to fill the gap, but today he mentioned there is a way to add an expander that they can tinker with periodically so it expands the skull very slowly, at a pace the skull can keep up with to create new bone.
And with that, our world is a bit flipped upside down…we have always know there would be challenges with G, but they were development related, and we have always been relieved he isn’t “sick” and in the hospital, and all of that….well, now we know things can change so quickly. I still can’t understand why no doctor ever mentioned this before, and am a bit frustrated we didn’t catch this when he was an infant. I have to rely on God’s timing, and this is how it was supposed to work out. 🙂 The only time I cried was discussing anesthesia required for the pressure monitor to be placed, but Dr. George did understand my concerns and explain there are multiple ways to put him under and we would find the best way.
G’s ACC also makes him prone to seizures – we have been so very blessed that this hasn’t happened yet, and I asked Dr. George how touching his brain with this wire could affect this. He was very honest – the stress of the procedure, the wire, who knows, could induce seizures, but he can’t say in any way that it will or won’t. That is a bit hard to hear, but we are glad for his honesty.
So with that, we work on scheduling a 2-3 day hospital stay – fun! We are heading out of town next week and will deal with it upon our return. We are glad there isn’t immense urgency and are so very thankful for those around the world praying, thinking, and loving us! Thank you from the bottom of our hearts, we are more grateful than you can ever know!
And to confirm, we have never found a hat that fits G’s head…that darn sagittal suture has been wreaking havoc on G’s wardrobe for 3 years, at least now we know what’s responsible! 😉