So it’s been an very active last three days. By Friday, Madison’s eye crossing was even worse. She had a rough night on Thursday, but on Friday morning she seemed a bit calmer. Still, Julie took her to the ophthalmologist to see get his opinion. The ophthalmologist was convinced her eyes were fine and that the crossing was due to a neurological event. He consulted with our neurosurgeon and they agreed that the crossing must be due to pressure being exerted on an optic nerve. They also both agreed that the pressure must be dealt with soon.
This proposed surgery would be much more risky than her prior surgeries. For those of you who have been reading the blog for a while, this is the surgery that we are trying to postpone for as long as possible given the risks. Her fourth ventricle needs to be drained at some point, and there are two options. The first option is to punch a hole between the wall of her third ventricle and the fourth ventricle. The fourth would then drain through the third, which already has a catheter in it. This method carries significant risks of bleeding, as well as risks of vision loss. The other option is to place another catheter through the back of her head and insert it directly into the fourth ventricle. This method would mean yet another piece of tubing that would carry the risk of failure or infection down the road. The doctor would decide on the fly which way to go once he was in surgery and could better evaluate the options.
So, we scheduled Madison for an MRI and surgery this morning (Saturday) at 8am. I got up at 5am and got her ready to go for her 6am check-in. Interestingly, though, when she opened her eyes this morning they were straight as could be with no crossing. We went to the hospital and got checked in for pre-op. But before I would let them administer any sedation, I requested that the surgeon re-examine her eyes since I thought they were much straighter than the prior evening. The surgeon (who had just examined her at 5pm the prior afternoon) came in, looked at her eyes and said, “Wow, she looks great; way better than yesterday. Given the risks of surgery, we don’t want to operate if there isn’t a pressing issue. So, no reason to do surgery today. See you Monday for an MRI.”
So, Julie and I packed Madison back up and left. And since we had already arranged for baby sitting, we stopped for breakfast on the way home and had our first breakfast out in months. Madison was great the whole time as she enjoyed her bottle. What began as a not so great day, instead turned into a very nice family breakfast.
Bill and Julie's space 