Sorry I didn't update yesterday. I spent a while at the hospital yesterday but was worn out and just not feeling well at all after I came home, so I opted to wait until today.
I thought the older kiddos were going to come up to the hospital to work with the art therapy lady, but there was some sort of communication error about what was going to happen....so they didn't end up coming after all. Kind of a bummer, but the therapy lady got us some coloring stuff and play doh for Alex and Evan to keep them occupied. Mom had them all weekend and had to drop them off at the hospital, so we had to try to keep them occupied and quiet in the room. Since Ayden was moved back to the critical care unit he wasn't given an enclosed room, it's just a room that's curtained off. Because of his condition he has to have a nurse around 24/7. Unlike before when someone would just pop in and out. (at least, that's my understanding of it)
Needless to say they have to keep a shorter leash on the boys because of this. And for the most part they did pretty good. We had to shush them every so often, but they had fun playing with magnets and play doh and watching a movie on my laptop. It was much more difficult when they started to get bored and hungry, so dad had to take them home before they both had total melt downs.
When I got to the hospital yesterday I was actually alone with Ayden for a while before anyone got back. Everyone had gone out, I thought, toa get the older kids so it was just he and I and the nurse. (her name was Cassie, she was SO nice.) He slept pretty much the entire time I was there. I figured because of the sedation, but they had actually removed him from sedation and pain medication. They thought those things were affecting him not wanting to breath on his own for long, so they took him off. Apparently he breathed on his own for about 20 hours on Saturday. But about an hour before they had planned on extubating him he crashed. (stop breathing on his own, stats all went low)
You can tell he's just very very tired. Anymore when the nurses come in to change his diaper, check his wires/tubes, he gets extremely angry. His heart races and he cries and gets very very worked up to the point of hyperventilating. Before it didn't seem like he minded it much, but now I guess he's just exhausted...from everything. He did open his eyes a little bit while I was there, but at this point it's hard to tell if it's because he's awake or if it's from the pressure in his brain. Sometimes his eyes will open and bounce around, which is a little...disturbing? I don't know if that's the right word for it. Either way it makes me sad to see.
I believe there was more swelling as well, but they don't plan on doing the shunt. Yesterday my brother and Amanda were really stressed out and over all not feeling well, so I didn't get a lot of details about that. Also I was trying my best to help wrangle the boys so they wouldn't have to worry about it.
I talked to Amanda today and things are generally the same. They are going to try to extubate him again today though, so they again gave him a bunch of caffeine. Which apparently has made him very cranky and twitchy, but they need that so he'll be more awake to breathe on his own. On the plus side, I hear they got to hold him today. Which is great considering I don't think anyone has gotten to hold him since probably last weekend. I know they're happy about that.
If extubating him doesn't work this time, I believe it'll be the last time it's attempted. Amanda says they'll pursue other options, although I don't know what those might be. I guess time will tell.
I guess that's about all the update I have. As always, I'll update when I know more
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