Lodged in Charlie’s head is a very basic, but very necessary piece of engineering equipment: a pressure valve. After an extreme brain bleed on his second day of life, he developed scar tissue that prevented the fluid in his head from draining properly. The condition that resulted, hydrocephalus, used to be fatal, but these days is easily treated with a valve.
I almost never talk about the valve in Charlie’s head and to be honest, I only worry about it when he becomes horrible cranky and I have trouble detecting the reason. Charlie was shunted at four months of age and we were told that he would out-grow the small size valve at around age two. Well, he’ll be four next week and we’re still using that same one.
You can see where I’m going with this, right?
At his last CT Scan, which was in January, it’s unclear whether the shunt is even in the ventricle any more–the doctor thinks it’s not. At this point he isn’t having any dramatic effects as a result. It is possible, however, that his ventricles are slowly enlarging and that at some point it’ll bite us in the butt with reduced vision, extreme irritability, headaches, seizures and other fun side effects.
The doc recommends doing a CT in about a month and if the ventricles are enlarged, going ahead with a shunt revision before things get really bad. There is a tiny possibility that Charlie has outgrown the need for a shunt and his ventricles will be fine. In that case, we do nothing. Wouldn’t that be awesome?
I agreed to the plan, but sometime in the afternoon I started actually thinking about it.
Surgery in July would mean me at home with two newborns and my son in the hospital–probably with his Dad. There are about a thousand things that are wrong with that scenario, but the big one is: my baby, in a hospital, without his mommy. I’m sorry, but it can’t go down that way. I am a lot of things, but I’m not near strong enough to let my child recover from brain surgery without me.
So tomorrow I will call the neurosurgeon and see if we can get on the CT schedule ASAP. If surgery needs to be done, we’ll aim for some time in the next three weeks. I cannot put into words how much this hurts me. It hurts me to think about bumping up surgery. It hurts to imagine that I have to calmly schedule this like it’s a tooth cleaning. This is a big deal and it deserves my full attention.
I feel like I’ve asked for a million prayers since Charlie was born, but I’m asking for a million and one. First, go ahead and pray that he doesn’t need the shunt any more–that would be a real miracle. Second, if he does end up needing surgery, please pray that it goes smoothly and that I am able to be there with him.
I love being Charlie’s mom, but I really could skip decisions like these.