We had an early start this morning and contended with rain and streetcars to get to the hospital on time for the 9:00 meeting with Dr. Dirks. I had already decided ahead of time that emotions were running too high for me to be a part of the meeting, although it pains me to not be “in the know” as to what was discussed. I also didn’t want Gavin to hear the conversation, and thought it would be a calmer experience if Rational Craig attended without his lovely wife and Bean.
We found the neurosurgery office in an unfamiliar wing of the hospital and waited a few minutes to meet with Dr. Dirks. Gavin was singularly unimpressed with the selection of back copies of The New Yorker and kept asking where the toys were. Clearly, they don’t usually meet with kids there! The doctor had a quick peek at Gavin’s head and then Bean and I went off to wander around a bit. We amused ourselves mostly by looking at the framed display of items (from pre QE II days) retrieved from children’s stomachs and airways. Coins for the most part, SAFETY PINS, jewellery and NAILS. Yikes! I explained to Gav that these were silly kids who didn’t know that they weren’t supposed to swallow things like that. He later passed this info on the Daddy: We saw coins! The kids swallowed them and they were silly!
At any rate. The meeting went well and a plan has been formed. Essentially, what Dr. Dirks believes may have happened is that Gavin’s shunt is not working optimally. It is working well enough to not produce any symptoms of hydrocephalus, but it has not been draining away enough CSF to prevent increased pressure in the area where Gavin’s skull didn’t close after last year’s surgery. Over time, the pressure of the fluid has been enough to erode the part of the skull that was there, largely increasing the hole, and allowing the brain to sag out of the skull beneath the skin.
Our first option then, is to partially remove the shunt and make sure that it is working properly. It looks like this will happen next week. If there is a problem, correcting it may help the situation by allowing the brain to sink back into the skull cavity, and allowing the skull to begin to heal around the edges of the opening. Then, we could potentially let sleeping dogs lie for awhile if this works.
At some point, some sort of corrective surgery will need to be done to fix the damaged area. We don’t yet know when this would take place. If all is well, it may not be for some years as it is best to allow the skull to do all the growing it needs to do before addressing these issues. Down the road, though, Gavin will need to have some sort of plate put into his skull, either titanium or plastic, and he will also have to have the membranes repaired that are meant to hold the brain in place. This can be done with a graft from his own healthy tissue.
Obviously, all of these options are frightening and surreal. I have gone from a relatively lax place with Gavin, back to constant hawk-eye observation. Just knowing that his brain is beneath the surface of his skin is enough to make me want to swathe the whole house, (and him) in bubble-wrap. But I know that extreme moves are not the way right now and I have to keep a sense of normalcy for Gavin.
We are looking into options for helmets and are considering the drawbacks and benefits of going full-time with one. We shall see.
In other news, directly after this appointment, we went for a repeat ECHO. As usual, Gavin was a star. I had been notified of the appointment a few weeks ago and told to appear in cardiology at 8:00 am for sedation. I then had to call and explain to the admin assistant that Gavin has undergone at least 8 ECHOs without sedation and would certainly not need it! Once she had cleared it with whomever, we were able to proceed as planned. I still cannot understand WHY in this age of technology these sorts of details do not appear in a patient’s file.
I was slightly surprised to be approached by a cardiology research team member who informed me that they would like to include Gavin in a study. This is not the first time we have been approached for research and we are always glad to help, as it really only requires providing a sample of some sort. The thing that surprised me was that in this case Gavin’s DNA is being used as a “healthy control” to try to find genetic markers in congenital heart disease! I asked the researcher how a child with Gavin’s history could be considered the healthy control, and he explained that in this situation, Gavin was born with a perfectly healthy and normal heart, so his genes reflect that. Apparently, most of the “healthy” patients are in fact oncology patients. They weren’t born with heart issues, just genetic issues that led to cancer. And, I suppose, the oncology kids’ hearts are being followed anyway, whereas it’s hard to source completely normal and healthy kids to be part of the study.
From the ECHO, we went straight to clinic for blood-work where again Gavin proved his mettle. He did not cry or even let out a peep after being poked and having quite a bit of blood drawn. It was his first blood-work since having the line removed so it was a new experience for him. I was amazed and so proud to be his mama, especially given the blood-curdling shrieks the other kids emitted from only having a “finger poke.” His blood-work came back fine, as it has been lately, so that is one stress removed. I also learned that his ECHO was completely normal, another big sigh of relief there!
There are still many unknowns. I am practicing the power of positive thought to the extreme and trying not to allow any dark thoughts a moment’s credence. We believe with everything in us that next week’s surgery will reveal a problem and allow the issue to be fixed. We so wanted our summer of relaxation and we are still determined to have it.
My most sincere thanks to all of you for your beautiful messages and powerful prayers. I could not get through a day of this without you, and without knowing of all the people world-wide pulling for our little man. We are so grateful.