April 24, 2007
Post Surgery Update
You would think that after going through this routine a couple of times it would get easier, but it doesn't. It could be because I have grown so much closer to Niklas since he came home, or it could be that I can't stand seeing the little guy endure so much torture. Nevertheless, Mott Children's Hospital has a way of putting your life in perspective. Even though it's terrible that Niklas has to go through all of this, his experience really pales in comparison to the hurdles that so many other children face while they are there. I thank God that there are people who work at these places because I can't comprehend how someone can stand to see children in pain each day.
Niklas's surgery went well. It turned out that his shunt valve was clogged with protein and not functioning properly. While they were in there, they decided to replace the valve with a new one that can be adjusted without surgery via a magnetic remote control. This means that the neurosurgery dept. can adjust the pressure settings of the valve without making an incision, which is truly amazing.
After the surgery was over, we met Niklas in the surgical recovery room. It was heartbreaking to see him laying there with the dressings on his head, yet being such a little man about it. When Greta and I started talking to him, he recognized our voices and let out little whimpers in response. As a parent, you wish that you could just trade places with them and make it all go away. We got him settled in his hospital room, which is now a regular hospital room and not the NICU (he is, after all, a 4 month old now). Since he was not going to have the level of attention that he would get in the NICU, I decided to go home, pack a bag and come back to sleep there with him in his room. Around 8:00 p.m., he decided that he was no longer going to allow us to put the oxygen on his face. Every time that I tried, he pulled it back off so I eventually decided to give up. Amazingly, his oxygen saturation was 100% all night long which is a strong indication that he will be getting off of it permanently at our pulmonology appointent. this Friday.
Niklas and I shared the room with another couple and their little boy, and even though Niklas was a complete Angel, I did not get a single minute of sleep last night. The other little boy's dad snored so loud that I was convinced that there were bear mating behind the curtain. It was a long night, and I welcomed the moment when we were finally discharged. The neurosurgeon told me that Niklas's shunt is now programmed for a very low resistance setting. This means that more fluid might drain than is necessary and that we may see his fontanelle collapse a bit. At our follow up appointment next week they will probably adjust it, but I was told to bring him in if the top of his head resembled an ash tray. An ash tray? You have to wonder where that analogy came from. Did someone actually consider using their kid's head for that?
Posted by Jason R. Myers