Colby is wearing a t-shirt today that his BFF Amber got him. It reads, "This kid is awesome!" and has two thumbs up on it. How perfect is that? Because yes, Colby is awesome, and has been doing awesomely awesome with his trach. Today we gave him a bath (long overdue) and changed his bed linens. He took an almost 3-hour window off his vent. He tried his PMV inline for 25 minutes. Took him out to the roof garden for some fresh air. Holistic Therapy came and gave him a massage. Now he's getting his cough treatment and watching some SBob. Quite the busy boy, isn't he?
I'm done with all my trach training/education. The only thing keeping us here is the ex getting up here and finishing his. I spent over half an hour with him on the phone the other day, and we worked out a schedule where he could get his training done and we could get home this weekend. That's simply fabulous, right? Wrong! Hospital policy says he can't do this part of his training before he does that part of his training. Well shit. So then I had to call him back and now we're trying to figure out something else. Plus the nursing agency (we're switching) won't come out on the weekend to do a new patient assessment/care plan. So as of this moment, we're planning on getting out of here Monday morning, early, like 10 a.m., provided Colby's dad gets up here and gets the rest of his trach stuff done. He came up last night to do a trach change and a couple other little things on his sheet. As you know, trach changes have not been going well. The RT last night put a huge pillow under Colby's shoulders and really got his neck hyper extended. Poof, the new trach went right in. Guess that's what we've been doing wrong, along with being a little hesitant to keep putting the trach in even though we feel resistance. Apparently once you feel resistance, you need to "aim up", "hook it like a C", "move your wrist like shooting a basketball". Whatever. You can give us all the advice in the world, but until we've done it several times and it becomes more natural, we're going to struggle a little. Ah yes, nothing like inserting a plastic breathing tube in your son's throat! Don't get me wrong. I don't regret the trach, not for 1 second. But trach changes are for the birds.
When Amber came up yesterday for a visit, she and I hit Chipotle for lunch, of course. We've been here 3 weeks and I've been there 3 times :-) My tummy paid for it the rest of the night, but it was well worth it. I think I'm a prime candidate for a nap this afternoon. Maybe I'll snuggle up with Colby and we'll have "quiet time", which usually involves me falling asleep and Colby staying awake and pissed for an hour. He might go to sleep though, after his relaxing massage.
What is wrong with me? I mean what is wrong with me more than usual?! I'm in a bad mood. Horribly bitchy mood as a matter of fact. I just want everybody to GO AWAY. Or maybe I just want to RUN AWAY. I have no right to feel this way. For once, we are in the hospital for something good. I don't regret getting Colby's trach. He's doing fabulously fabulous since trach surgery. We've made "friends" with the TCC staff. We've been able to visit with other SMA families that are here on the unit. I'm surrounded by people who are trying to help. Don't know if I'm overcome with frustration of wanting to get home, even if only for a few days, or total boredom. Don't know if we've just flat out spent too much time in this hospital over the last several months, or if I'm a total grumpyass. Or maybe it's knowing we have to turn around and come right back up here for the BTT (bronch, teeth, testicles) procedures, then in a few months return for spine surgery. I don't know. I know people have called and I haven't called you back. I'm sorry. I know my BFF's have had to get my complaining, whiny texts. I'm sorry. Thanks for the encouraging words. We'll be home soon to tray and figure out our new post-trach normalcy. Hopefully my usual pleasant, unoffensive, sweet, kind demeanor will return shortly. (Why are you laughing?!)
No comments:
Post a Comment