Some little boy is kickin butt in the TCC and his name is Colby Michael Russ! We got to the TCC on Tuesday afternoon. The transition was smooth. They brought the Trilogy down to the PICU, set Colby up on it, and away we went to the 6th floor. The Trilogy is the latest and greatest bi-pap machine that we SMA families are discovering, trialing, and hopefully getting for our kiddos. I know of 2 other local families that have one, and 1 other family trying to get one. And guess who's gonna be next on the list? Uh huh, Mr. Colby. The Trilogy can be used as a vent for a trached patient but also has a bi-pap mode. You can fine tune the settings much better than the bi-paps Colby current has for home use. Another great benefit is portability. It runs for several hours on its own battery! How great would it be to NOT carry around a 30-pound battery back to run the bi-pap? Super great. Plus the machine is very quiet. I had to lean over Colby a few times at the beginning of the Trilogy trial to make sure it was on. Yeah, if I could, I'd be sneaking that bad boy into my overnight bag for the ride home.
The TCC is very different from the PICU. You have to learn all new docs, nurses and RTs. They set up his feeding pump different (no big deal really but just another difference.) We don't have a shower in the room and the sleeping arrangements totally suck. We've put in for a sleep room the last 2 nights and didn't get one. The first night I took the foldout thingy and my poor mom slept on this tiny cushioned bench. Good thing she's petite! Last night I slept in bed with Colby (which was much easier when he was about a foot shorter) and Dad got the pullout thingy.
So here's the news we've been waiting for: DISCHARGE PLANS!! I'm working with the discharge nurse to get us home on Saturday. Yippee. Goodie. Thank God. Can't wait. Prayers answered. Cool beans. Giddy up. And we're outta here. Colby has gradually been increasing his windows (time off his bi-pap) over the last couple days. His 1st break was 5 minutes, haha, while we were still on the PICU. An RT and I snuck that one in. Then he windowed 15 minutes, then 20, 30, etc., gradually increasing each time. This morning he took a 1-hour break off his bi-pap. Great job Colby. His oxygen level stayed fine. Heart rate was a bit elevated but overall he did great. After his 6:00 cough treatment tonight, we're going for another 1-hour window.
We're also almost at home settings. Currently he is at 22/7 with a rate of 20. All we have to do is go to 21/7 and he will be at home settings. Like I've already said, it doesn't bother me to take him home on 22/7. But for some reason, they are hell bent on Colby being at those settings. The TCC resident, attending and I have had "discussions" on issues for Colby. You can guess which ones, when to change his bi-pap settings, what his CO2 levels should be, etc. Same shit, different day. The attending tried to tell me "their" plan for Colby. Then I told him the real plan, MY plan, for Colby, which has been followed so I won't gripe too much. Although I will say after having "discussions" with the little punk resident, I need a t-shirt that reads: I eat residents for breakfast.
Colby is trying a new mask. Nasal prongs actually instead of a mask. They're pretty cool and he is tolerating them well. This way he can wear his glasses and won't have skin breakdown around his nose. Our RTs over the last couple of days have been great. They've worked really hard to understand what my goals are for Colby and make Colby as comfortable as possible.
Okay, this update is getting rather long so I'll wrap it up for now. Just had to share the good news that COLBY IS IMPROVING. WE'LL BE HOME SOON. MY KID ROCKS. Bye for now everyone. THANK YOU for your continued prayers and support. Much, much appreciated.
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