Well his numbers went to 7 right after the transfusion, down to 5.6, then up to 5.9, not good, they think his body is still chewing up his red blood cells.
He's got IVs in both Arms again, and they are giving him another 8 hours of IVIG, we have hours to go on it. So we'll see what happens tomorrow. At first they weren't going to give another transfusion of blood but based on some blood work and a slight improvement in one measurement they decided to. I think his color looks much better today. Thank you all for keeping us in your prayers. This morning dad was annoying him just a little and Austin called him a "Dumb Ass" something he picked up from Pawn Stars so I think that's another indication that maybe he's improving.
He had to have chest X-Rays today, he's been coughing and his oxygen levels are dropping, all was clear and he's on oxygen now (more so to just make it a little easier with all that is going on with his red blood cells) but not all the time.
He had a minor meltdown today, but if I was him, with the amount of pokes and probes, numerous blood draws, IVs in both arms, I'd have a meltdown as well. If was triggered by his two IV machines, one would have an alarm, they'd clear it than the other would have an alarm, They found a little kink in the one IV right where it was taped, to fix it they had to remove the tape . He didn't like that, it was the last straw. I left the room, thinking how upset he would be if I wasn't here, just walked down the hall, so when I got back he was ready to work with me, first thing I had to tell all the staff to turn around and avoid eye contact or leave the room, or else it might only escalate, they left, all but the nurse working on the IV and we quickly arrived to the final process of the meltdown, the intense remorse. By the time I'm all done with this I could probably write a book. I think I'm going to modify and tweak something I use called a "Positive Student Profile" to be a version for Hospital Staff. I've also thinking about what I might need to do next week so I've got a call in to Austin's personal agent at CLS. We did get everything canceled for our speech & language research study trip to South Carolina next week, hopefully in a couple of months I can reschedule this adventure. Had to laugh earlier today Austin told me he needed a vacation, we've got it all planned out in our heads ... He's going to Disney World and I'm gonna go to Aruba :-)
Being in a hospital is tough for anyone and I'm sure it's a lot tougher for Austin.
Austin isn't eating well, he's missing all of his home meal routines, a bagel lightly cooked in the morning, always one hot dog in the afternoon. While Jerry was here I went across the street to the Boulevard Café & Coney Island. It was just before 4, the door was open but when I walked in they told me they were closed. I told them about Austin and they cooked him a hot dog on the house, WONDERFUL people in the "D". I've got their carry out menu and we will be back.
Often it's difficult for me to respond to texts, please accept my apologies in advance, Austin's getting a lot of my attention and once I get a quiet moment I'll type and distribute.
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| At least Natalie and I got him to smile, Mom picked him up a balloon at the gift shop. |
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