Day 13

Shunt day

At our boy’s bedside in the hospital. We have been adjusting his EVD for the last few days from 10 to 15 and then to 20 to see how he could tolerate the pressure in his brain. Unfortunately, it didn’t seem he was handling it well so the neurosurgery team broke the news that we would need to have another surgery to implant a shunt into his head.

Although this is somewhat common in brain surgery patients, it meant another surgery and the risks and complications that come with it all. I stayed glued to his side (bothering him, like it was my job) all day until they wheeled him off at 3 pm. It was meant to be a quick surgery but we didn’t get him back until around 7:30. Those hours are some of the hardest. Breathing is hard, staring off into nothing is hard, really, it’s all just hard.

He handled it all like a champ and had a pretty good night’s rest considering they do hourly neuro checks where they shine a bright light into his eyes and poke and prod him constantly. Really, all of the staff here loves him so. We have been very lucky to be surrounded by incredible doctors and nurses.

Being his 3rd brain surgery since we’ve been here, he lost more hair and now just needs it all cut. They said they could help us with that.