June 22, 2015

Most of the day went pretty good. Originally we had an MRI scheduled along with a Lumbar Puncture. They originally were supposed to happen around the same time so he could just be asleep for both procedures.

Around 11:30 AM we went down for the MRI and gradually his breathing kept getting worse and worse. As they were doing the final preparations before sudating him the PA decided it was too risky and called it off. We then scheduled him for an MRI for tomorrow to be done with an anesthesiologist.

Around 3 PM we were able to go down for the lumbar puncture in radiology. We gave him some morphine before we went down  abs that kept him calm for the procedure and we didn't have to sudate him any further. After we were finished we were able to restart his food. He hadn't eaten since early in the morning.

He rested and played for the early evening and we talked to his different doctors about going home. But I think this kid always knows when we are getting close to leaving and decides to act up. Around 8 or 9 PM his heart rate was up around 180 to 190. We gave him.some more morphine because we thought it was pain related. After about an hour that didn't help at all and he was just cranky and stiff. We then thought it could be a seizure and so we gave him some ativan around 10 PM and that helped him to relax and fall asleep but his heart rate was still around 170. At that point Cameron and I felt confident enough to go and rest but around 5:00 AM we got a call that he was "storming" since about 3 AM. Storming is kind of like a seizure but it is pretty much where the brain miss fires and sends a lot of signals. The doctor said that they don't know why it happens but it can happen with kids with nurologic damage. Going forward he will probably be given a maitenance drug daily which is similar with how we keep his seizures under control.

I showed up to the hospital around 5:30 and by that point he had been given a second dose of the med that is supposed to control the storming and as soon as I walked in is when it started working and he loosened up and stopped moaning and fussing. His heart rate has come down to about 160 and we also gave him some oxy to help with the storming as well. I will be talking to the nurologists about this in more detail latter today and we will probably ly be in the hospital.for at least 2 or 3 more days from now. This all I'd very scary, especially when the doctors say "I don't know why he is doing this" but I am glad it happened here instead of at home and I'm glad that they think that they know what it is and that we can treat it.