Not a whole lot accomplished today.
BUT, I did call Dr. Lahiri's office, the pulmonologist who will be doing Casey's bronchoscopy on Monday, in hopes that he'd call me back to chat with me about the procedure. Well, I was writing down my questions when I called and the person said let me see if he's out of clinic. A minute later he was on the phone! I love that our docs are so accessible! We had a nice chat but I didn't ask him all that I wanted to because I hadn't written down all my questions yet, ha ha. Oh well, I'm feeling better about the whole thing. The two worst things will be getting there at an unheard of hour--not sure when exactly, but Casey is the first procedure and they usually start at 7:25, yikes! Secondly, we have to get there early and head to the Comfort Zone to get Casey's IV. Other than that, Dr. Lahiri thinks it will be quick--like 10 minutes. He doesn't anticipate any complications and he's not even sure if he needs to do the wash procedure. That would show if he's had any aspirations (not a concern), take a sample of cells (probably not necessary) and take a culture to see if anything is lingering in his lungs. Mostly we just want to see if there is any inflammation or anything unusual going on which we really don't anticipate, either. We'll also try to upsize his trach to a Shiley 6.0 long which is the next size up. I'm hoping it will help alleviate his plugging and also go a bit longer down which will hopefully ventilate him a little better and make us not so worried that his trach is going to come out. He's had this size for as long as I can remember and he's grown a lot. Tomorrow I speak with anesthesia. Dr. Lahiri knows not to fast SMA kids too long so he's in my corner. He's going to try to talk with them before they call me but he said to tell them to call him directly if there is any problem. I have no problem of giving him just formula, water and juice with no baby foods or supplements during the night and stopping about 4 hours before surgery and then giving him Pedialyte for a while and stopping a couple of hours before surgery. Anyway, I know they won't give me a problem of restarting him right afterwards. Last time he had tubes, and his 'nether region' operated on they let us start up once we felt he was feeling good and not queasy. Boy, this is a long paragraph, sorry!!!
Colin wasn't too cooperative in school today. It started before Mel came to do Music so it wasn't that. Not sure but I think he was just finding it fun to be ornery. He didn't earn a fun break so he did nothing for half an hour instead of watching wii walkthroughs like he usually gets to.
Casey has a pretty good day. But, he wasn't into his Creative Writing class. He had to leave for being too noisy. They decided he would write a letter saying why he didn't like the class. Paula tried to give him some ideas but Casey had his own:
Mrs. Short,
I am upset about class.
I want to go library.
Casey
He really liked the Read, Read, Read class because it was a relaxed atmosphere and was in the library which is one of his favorite places in school. Of course we all told him we understood but sometimes it's good to try new things and see how it goes. So we will persevere and I hope he comes to enjoy it.
Played Skylander's SwapForce for about an hour. We had a tough time defeating one of the bosses...I forget his name but we killed a bunch of our guys before we defeated him, phew!
Casey hasn't been complaining about not being able to do his Google maps. Gene was going to call this afternoon but didn't. I hope Paula can figure it out tomorrow.
Gene went to Costco for vinegar and dog food. It's almost 8 PM and he's not back yet--it's time for bed!
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