If you missed the news, Tyson is in the hospital again. This time it's respiratory...which is definitely better than the psychosis, but still not cool since he hasn't had a hospital admission for respiratory in about 16 months. Sigh... (Again, to keep updated or learn more about Tyson go to www.facebook.com/tysonsawyer)
I'm disappointed because we got great news last week about weaning off the vent and possible decannulation next summer (which will be 5 long long looooooong years in the making). So this is like we stepped forward then got hit with a Mack truck and pushed back a couple miles. I seriously feel like I'm swimming in mud. When is this kid going to get a break?
But that's not really why I'm blogging. And as I always say, this blog is not about Tyson (although he certainly has done his fair share in the last two months to wiggle his way into it). No no, today I am angry at my brain.
When Tyson is in the hospital we do a lot of juggling to figure out who will be with him (me, my mom, or Luke), who will have the other kids when I am at the hospital and Luke is working (my in-laws or my mom and step dad), who will take the other kids to their events (me, Luke, mom, whoever wants to brave the trenches)...what to eat, when we can sleep, how to do work, what to pack, when to sit and pee...yadda yadda yadda. I've made all the arrangements (with help from Luke, mom, and Vic, my mother-in-law) for the kids and who's staying with Tyson, etc. But my head is still swirling with gotta do this, gotta do that. It just so happens that Monday, Tuesday and Thursday evenings Annie has dress rehearsals for her dance recital, and Tuesday is the last day of school so they have field day, and I have therapy on Monday morning and group on Wednesday (which I have to cancel again), and my mom is going to Chicago for my sister's graduation and her Chicago wedding shower....and then there's normal life. Ty, bad week to get sick, honey! Suck it up!
Today was beautiful. A little humid, but I like that. I wanted to enjoy the day I have at home (mom is with Tyson) with my kids and husband. I wanted to enjoy it outside, feel the sun, enjoy the breeze. I tried my hardest, but it was like I had ants crawling all over me. If I laid down to relax and sun bathe, if I sat on the swing to take a deep breath, if I sat on the trampoline bouncing with the kids, I felt antsy. My brain kept saying, "You gotta do this this and this!" I moved from one thing to the next like a toddler does when trying to find the thing that would entertain them most. The interesting thing is JJ even noticed my discomfort and inability to relax and enjoy. He asked me what was wrong. I honestly said, "I just don't know."
I ended up going back inside and played the Wii by myself to stimulate my brain in order to make it stop thinking about everything else. It helped while I was playing (and beating the level in Toy Story 3 that I was working on! Woot!), but as soon as I put it down, I was back to not being able to concentrate on anything.
Luke made mac-n-cheese for dinner. I hate mac-n-cheese unless it's home made so I ventured off looking for something else to eat. I stood in front of the freezer and pulled out a box of something, then put it back, and did that over and over again. It's almost like my brain is so flustered that my taste buds are too. I ended up eating cereal. Not because I wanted cereal, but because I knew I should eat something and couldn't figure out what I wanted.
I'm very much looking forward to bedtime so I can take my medications and that will turn my brain off for a while. I didn't do anything significant today, yet I'm utterly exhausted. If only I could lose weight from the amount of activity my brain does....
(PS Not complaining, or looking for advice, just talkin' to keep my brain busy.)
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