Post Surgery

Lucas’ surgery is over and we are back home today. Everything went well on Monday, however, we ended up having to spend an extra night at the hospital due to some questionable reactions to the surgery (which is why I am just now getting to this update). Dr. Yaun reported that there was definitely pressure when she went in, and feels that we caught this before Lucas would have eventually started showing more severe symptoms – like extreme headaches, more severe apnea, throwing up, etc. The good side of all of this is that they caught it early through the sleep study before it could become more of a problem for Lucas.

We had to stay longer because Monday night around 11 pm they noticed that one of his eyes was dilated, while the other was not. This sent everyone into a panic and within 15 minutes we were downstairs in Radiology getting an emergency CT scan. We didn’t really know what they were looking for, so it was pretty scary. The neuro assistant on call that night even drove back into the hospital at midnight because of his eyes and to see the scan. She said, “When I heard about his eyes, I was so worried, and I just had to come in here and see him for myself.” But, she was really happy to tell us that it was ok, and that they were worried he had bleeding in the brain. She said usually dilated pupils can mean there is a significant amount of bleeding happening (which would have been very bad). I sensed that she was as relieved as we were, and happy to tell us that the new shunt placement was fine and everything appeared to be working well.

When our neurosurgeon saw him on Tuesday morning, she decided we should stay through the day to see if his dilation and swelling changed. It didn’t really improve through the day, so we spent another night to be under close watch because they didn’t have a clear answer as to why this was happening. He had a quiet night last night, so we were discharged today, although his eyes are still the same. His left eye is constantly dilated, and it is not really moving with the right. It is also swollen and only opens half way, so the poor little guy looks like he’s been punched in the eye.

They believe the reason for the change is because his head is reacting to the change in pressure, and one of the visual nerves that controls dilation runs directly under the area that was just affected by the shunt. Hopefully this is true and this reaction is temporary as his brain figures everything out again. Normally children with hydrocephalus have a more severe block, and it only takes a few days to build pressure and make them sick (which is relieved through surgery and they tend to feel instantly better)… but, as we’ve always known with Lucas, his block is not so significant to make him build fluid quickly. It tends to build over a long period of time, and then eventually hits the tipping point (as we saw in him in the NICU when we were unsure if he needed the shunt the first and second time). They think that Lucas was adjusting to the pressure as it built in this area little-by-little, with his eyes also adjusting to this pressure… and now that the pressure has suddenly been relieved, it is throwing things off, with the pressure not being equalized. The neurologist said that this is probably causing him additional discomfort on top of recovering from the surgery.

He’s getting better though, and seems to be in better spirits today. He has some good moments where he is cooing and smiling which tells us he’s going to be fine, but they do end pretty quickly as he is very, very tired. He’s been crying a lot, which breaks my heart more than I can even express. For a baby that seriously never cries—to hear this tiny little guy whimper and not be able to anything about it is indescribable. It was much worse this time than when he was in the NICU, now that he’s older and can express much more what he’s feeling. I think we expected that this would be quick and fairly painless, but unfortunately it wasn’t easy for him. I also think we’ve become a little desensitized to these surgeries having lived through the 5 months in the NICU, and this one in particular was described so simply to us (in comparison to installing a full shunt). But if you think about what they had to do… they made an incision in his head, drilled a hole in the skull, and pushed a catheter through the brain matter to place it into the ventricle inside the brain. This is no small task, and of course, this was rough on him! I hope we never, ever, have to do this again!

I know tomorrow will be a better day, each day has been better than the previous one– he is a trooper and I’m sure he will bounce back with more time. Now that we’re home and he’s in his familiar crib, he seems to be sleeping a lot better, and he’s eating well – all good signs. Thanks so much for all the well wishes and prayers that we’ve received this week, and to Gran and GranDan for being there with us at the hospital!