Captain Awesome has a certain way of saying "yeah" in a way that I really can't portray online, it is a jack of all trades response. He uses it for just about everything regardless of what he really means to say, yeah, is what comes out. I have to say that often this drives me nuts, but I am starting to really warm up to it. I don't know if it is just life or life with rett, but "yeah" seems to be the best response I can come up with these days. Monday was crazy, I assume that you read and if you haven't, reference my last post. Tuesday was nearly just as maddening. Claire had another episode but we spared the trip to the er. The neurologist had apparently called the er on Monday to tell us they could admit us to LPCH but we had already gone home and nobody tried any harder to find us?!?! After several phone calls back and forth, the neurologist had again found a bed for Claire at LPCH so we could get an EEG going and figure out what crazy was going on in her head. We checked in around 9:30 Tuesday night and Claire fell asleep around 2:30 that morning and woke for the day at 6. She was an excellent patient, she had three good freaky episodes and we got it all, we even discovered that her heart drops to 40 just before it happens, isn't that exciting, not really. When the expert came to read the EEG he kept asking if I hit the button when she had the episodes, yes, of coarse I did, but there was no abnormal (for Claire) activity when the button was pushed. She's wasn't having seizures, she has rett syndrome, why didn't I think of that! Claire was getting less patient about being in the hospital bed. We danced on the bed, read stories, painted nails and anything else I could think of, but she was tired, too tired to sleep. She laid there motionless and awake until 4 so I knew there would be no daytime sleeping as we had hoped. With the good news that it was not seizures, I asked to be released. They said no. I lost it. First the attending came in to explain it to me, apparently my sobbing really concerned her so she sent in a social worker to talk through it with me. You know it is bad when the social worker leaves themselves fighting back tears and no real advice other than, here's my card, if you ever just need to talk. I think that by 5 I had cried so much I was dehydrated but I did regain composure. Jared felt it safe to leave and I promised to be nice to any more doctors that I came in contact with. Around 6 the neurologist came in, I tried to keep my cool but it didn't work. She was sympathetic and understood why I didn't want to stay the night. We have a 72 hour EEG at home scheduled in 3 weeks and diastat in the mean time, so they honorably discharged us (instead of making us leave AMA which had been in the conversation). We finally left around 8 and by 9 had Claire home and tucked into her own bed. As I faced reentry there have been many questions, people asking, how's Claire? The best I can come up with is, yeah. Part of me wants to scream "what part of severely disabled do you not understand" but I know that is a little harsh, they are well intended. She has rett syndrome. Since she has that she has these super freaky spells that make her stiff, her eyes close and her tongue turns in her mouth, she darts her eyes at me in a silent plea for help, there is no medicine, nothing I can do when this happens, and as quickly as it comes it leaves. Yes, we are out of a hospital and we didn't go in an ambulance today, so by that standard it was a good day. For having rett syndrome, Claire is doing very well and I can't forget that. With each of these episodes comes something new and wonderful. She spoke three words on Thursday and Friday had such an epic horse therapy session they went long (in 40 degrees and rain), certainly these episodes are not damaging her brain and that is indeed a good thing. But can I just be selfish and wish that we could make small gains like this without having occurrences every day that force me to think, do I call 911 or not? I am sure I will come up with more words if and when I become well rested, but for now, I think 'yeah' about sums it up.


Erica said...

yeah. i hear that. no, really, I can hear jared saying that!
thinking about you guys.

JourneyBeyondSurvival said...

You poor darling. I'm sitting in the hospital with my other two kids farmed out, and trying to get her better. I completely understand you not wanting to stay over.

I too almost walked out of the hospital AMA on Friday, so I sympathize completely. I hope that it's much much eased and you can get some sleep!