Holy Hell Has This Been a Weekend

If you know me on FB, you already know that we spent Saturday afternoon and night in the ER with Sh.awn. I think I may have lost at least ten years from my life from the experience.

He woke up from his nap retching and throwing up. He was disoriented and was weak. Remembering the last time he snapped out of this kind of behavior, I threw him in the tub and resigned myself to waiting it out for a while. Except this time it was different. He couldn't catch his breath. His heart was beating VERY fast (at the ER, his heart rate was at 160). His eyes were doing their thing. His clonus was on overdrive. He tried to use his weaker right arm, but couldn't get it to clasp around the toy he wanted to hold and was having trouble opening his fist.

We freaked the fuck out. Here he was with breathing that was not normal for him, AND he couldn't use his arm at all. He even had trouble sitting up without a lot of support.

We called my mom to come watch the J's. I started packing a change for both of us and some stuff to keep Sh.awn occupied while we were at the hospital.

We debated where to take him--local hospital which wouldn't be able to do much more than scan him, or Children's hospital where our doctor was. Based on the way he was breathing, we went to the former. They did a CT scan there, but really that was all they did for us. We waited for far too long for them to read the scans only to be told that we'd have to go to Children's anyway. Sigh.

We knew that. We went to the local hospital for them to see what was up with his breathing. The tested his saturation level (98) and heart rate. That was about it. They didn't do anything for his breathing at all. He wasn't hooked to any monitors. There was no oxygen because his sats were good. After about 2 hours, he finally started to breath normally on his own.

The local hospital released us after 6 hours and let us drive to Children's. By that time, Sh.awn had started to act like his normal, extremely pissed at the medical world, self.

At Children's, it was more of the same. They compared his scan to the one he had the last time this happened. They said there were only minimal changes. They offered to do a tap, but we declined. I didn't want to introduce anything unnecessary to his shunt and increase his infection risks. It was clear that his shunt was working at that point, especially in light of his stable scans and normal behavior.

So, what is going on? I can't keep doing this.

Theory one is that he has some sort of occlusion (or scarring which scares me) that is sticking around to fuck things up every now and then. It moves in, causes a blockage and symptoms, and then moves back out of the way. This is plausible, especially in light of the fact that he seems to recover from the initial symptoms after he changes positions and is kept upright. (Had we allowed the tap, there was a possibility that we would have either withdrawn the occlusion or perhaps caused another brief blockage, giving us our answer to what was happening. Then again, the likelihood of that was slim.)

Theory two is that his pressure tolerance is changing. Even slight changes in the pressure in his head is enough to cause symptoms now. The problem with this theory is that the symptoms are not happening after a long night's sleep when you would expect the pressure to be at its greatest, but rather after a short nap when it is not as great.

Theory three is that both one and two are in play. An occlusion is causing a super slight increase of pressure, which doesn't show on the scans, but his body is reacting to it in a major way.

Theory four is...

wait for it...

this has something to do with him covering his face with his blanket while he takes his naps. He has always done this to block out light, etc. He doesn't do it at night because the room is dark and there is no need to. The idea is maybe he is inhaling too much carbon dioxide while he covers his head, and his body is reacting to the lack of oxygen. His hydro could also be making him very sensitive to even a tiny bit of carbon dioxide. They'd have to do a blood gas to check for that (hello NICU term), but they thought it wouldn't matter by the time we had finally reached Children's as his symptoms were completely gone anyway.

So.

They discharged him from Children's at around 2 am last night. We got home at around 3:30. He slept on me for the rest of the night, woke up at 7:45 am and hasn't acted funny since. He doesn't even act like he is freaking tired! (Unlike me, who is hardly able to think a coherent thought.)

We will meet with the neurosurgeon in a few weeks to follow up. I'd guess he isn't going to give us much more than we already got, so it feels pointless to even make the trek down there again.

The good news is that his shunt seems to be fine. He now seems to be fine. Ultimately, that's all that matters.