Shunt happens

(Note:this actually happened Sunday, July 27) So we are officially shunted, by we I mean he. We are free of the EVD (external shunt) which is awesome. I hated that thing (of course I am thankful for its purpose in keeping him alive and relieving pressure from his brain, but I hated it). We had to always make sure his head was level with the pole and stay on constant watch to ensure he didn't pull it out. It was an invitation to infection and most of all it drained his CSF (cerebral spinal fluid) to a bag that was just sitting in front of us. There is something unnerving about seeing the fluid come out of his body. But now it's gone!!! 

Baby Thomas has an internal shunt. It is definitely a trade-off. While he has no tube coming out of his head, he does now have noticeable tubing under his skin. 

It is a medium flow VP shunt (1.5 Delta valve). This brings it's own scary story with it. They have a failure rate of 40-60% and the average number of shunt revisions a person needs is 6.75. So we will have more than one shunt surgery, you just hope it's later in life when he can tolerate it a little better and when he can help identify the symptoms by telling us he has pain. Right now if it fails, we have to recognize the symptoms, which are not specific: irritability, sleepiness, vomiting, fever, or none of those or all of those or different ones. Well at least those symptoms aren't things a normal newborn would do (are you picking up on my sarcasm, because I am laying it on pretty thick!). The neurosurgeon also added that parents aren't very good at recognizing the shunt failure, half the time they bring them in and it is nothing. Well of course they do, you just listed all characteristics of a typical newborn! But as I mentioned in a previous post, this is worth it. I would rather be home and using my amazing detective skills to figure out if he is fussy because of his shunt or because it is the second Tuesday of the month. 

So the surgery went well, they said he did great and he basically slept all day yesterday since he was under general anesthesia for the procedure. Last night was our first real scare. We had some imaging done to double check the placement of the shunt and his ventricle size, the radiologist read the films and was concerned that his vents (that's what the cool kids call ventricles around here) had actually increased. This is the opposite of what the shunt is supposed to do so everyone was concerned. They had to track down the doc to see what he thought and on a Saturday night at 9:30 that is bit the quickest thing. So we were left waiting for a bit, thinking his shunt was failing and they would need to do a revision ASAP. Finally the doc called back and said he wasn't concerned. Everything was fine, Thomas was eating and had stirred a bit through the day, so he had no worries. Today when we came in, I got to speak to the surgeon who assisted in Thomas's surgery band he explained that they picked a valve that had a pressure a little higher than what the EVD was set at so they could intentionally plump up those vents (there I am being cool again) to keep his sutures in his skull (here is a diagram explaining what the sutures in the skull are, I thought sutures meant stitches so I had to ask http://www.stanfordchildrens.org/en/topic/default?id=anatomy-of-the-newborn-skull-90-P01840) from overlapping and fusing together. If the vents are too small, the sutures will sit on top of each other, so by plumping his vents with increased pressure it basically holds everything in place. It makes sense, would have enjoyed it if someone had explained that to us last night, or had even charted it so the nurses knew, but that's ok, we know now and there is nothing to worry about. 

Our biggest hurdle to get over right now is infection. Since he had an EVD, his chance of getting an infection is pretty high. And now that he has hardware inside his body, any little bugs that get in there will go right for the shunt and infect it, which will lead us to more surgery most likely. So we are thinking clean thoughts and trying to be as clean as possible around him. He can't be out in public for a while and not around any kids for a few weeks. We are crossing our fingers for no infection. 

This morning at rounds it was brought into the conversation about going home soon, I tried to be cool and surpass my initial reaction to championship fist and chest bump the neonatologist, mainly because it would probably hurt my stitches. We have to do 3 days post surgery antibiotics and then a circumcision the there is nothing holding us here if all else still looks good! So my realistic expectation is Thursday, which is awesome!!! I love having the nurses around all the time to teach us and to ask questions to, but I miss my big boys and my bed and real food and above all I can't wait to be a complete family of 5!!!!!