I got a sleep room last night. I get a call from Mom at 5:15 a.m., "Amy, this isn't an emergency, Colby's fine, but you need to come down to his room right away." I already knew what it was going to be about. So Colby's CO2 was slightly low. This is a good thing. As you know, the problem has been his CO2 has been too high. When it's lower, it's a sign he's breathing better on his own. Okay, that's great, wonderful. Glad to hear it. But I'll be damned if they didn't change Colby's vent settings without telling us, they just freakin' did it. What part of "no one is to touch these vent settings unless they've talked it over with Amy first" do these people just not get?! Not only did they turn down his settings, they CRANKED them down from 24/7 to 21/7. Another big no-no, as I've said I know at least 25 times over the last 3 weeks, we need to slowly wean Colby's settings. Oh my Lord I could've killed somebody. I kept my cool for the most part. The last thing I want to do is make a stressful situation even worse. But I did tell the nurse, you find me the doctor who ordered this and get them down here, NOW. So I told them to put the settings back to where they were and that we would talk about it in rounds. I also stressed no vent changes were to be made until Colby's pulmonologist approved. But it's all groovy now. Colby's attending doc this week is one of my all time fav docs. She's very easy to talk to and she agreed the settings shouldn't have been bothered. She stopped by a couple times through the day just to make sure I was okay with Colby's care and that I wasn't threatening to snap off somebody's head and shit right down their neck. We did adjust Colby's settings to 23/7 and at 4 p.m. they took another CO2 level and it was within normal range (well, normal for Colby.) So everybody got what they wanted after all, we just had to have a little drama before it happened.
I also heard the most beautiful 3 words from Colby's RT today, "Colby sounds clear." Ahhh, sweet music to my ears. And she was 100% correct, I listened to his lungs and they sound much better than a few days ago. Another good sign because I don't know if I've had an RT tell me that this entire admission. Another sign I think Colby is doing better. The cultures from Colby's bronchoscopy were all negative so Colby's antibiotics are now discontinued. They restarted the same ones he was on last week after he failed "E" just to be certain the original infection was gone, which it is. Anxious to see what tomorrow brings, hopefully more clear lungs.
I had the most wonderful visit from 2 SMA mom friends, Danielle and Susie. They live nearby and were nice enough to take time away from taking care of their own SMA kids to come see us. Not only that, they brought us supper, homemade supper of lasagna, salad and brownies. I mean really, how sweet is that? So good to see them. We keep saying we're going to get some of us SMA mommies together for an event away from a hospital or a fundraiser. Just get together for dinner or shopping or something non-SMAish like that. Their visit really brightened my day.
Guess I better lie down. I've got a whole 45 minutes before the RT will be in to do Colby's cough treatment. I'm hoping to report more progress to morrow. Nitey nite.
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