I think we'll be home soon. Yep, I said it! Colby is doing amazingly well. I think he just needed some extra time/antibiotics before coming off the vent. All those numbers and levels we look at have remained stable, so it hasn't been any problem convincing the docs to leave his setting alone for a while. We do have Colby weaned down to room air oxygen on his bi-pap, but other than that, no changes for now. No need.
Colby is wearing his bi-pap 24/7. The only time we take it off is to give him cough treatments, and even then we place it back on his nose between cycles. Not taking any chances! He's using his mask from home, a nasal mask. So we've had to use a chin strap with it in order to help keep him mouth closed to prevent pressure leakage. I know he doesn't like it, who would? He also can't wear his glasses while wearing the bi-pap. But I talked to Colby and I'm sure he understands these are small sacrifices to having that flippin' tube out of his throat. His jabbering is so sweet to hear, cracking all the nurses and RTs up b/c they haven't heard him until now. He's on his home feeds now, done with the TPN. Yeah, my kid is a total butt-kicking rock star.
The plan from here? In rounds this morning I heard words like "move down to TCC" (transitional care unit) and "home maybe next week." Probably starting tomorrow we'll start to wean his pressure settings just a little. Then after a day or 2 of that, start windowing (taking small breaks off the bi-pap.) I'm very picky about windowing, imagine that, and he'll start out very, very slow. No way am I pushing him to spend time off that bi-pap. All in good time and I'll do everything I can to make sure his progress is nothing but forward, no sliding back after he's come this far.
That's it for now. Pretty darn good, eh? Dad is on his way here and Mom will go home for a day or 2. I'm not going to lie, I'm very tired. Whatever the adjective is that comes after tired, grumpy and exhausted, that's me. I knew once he came off the vent, that would be my time to totally kick into Super Mama status. I need to watch that everything is being done correctly, at the right times, and also watch Colby's overall behavior. Yeah, you thought I was particular before, you should see me now. I bet they can't wait to get us out of this PICU! Actually I think the staff here really likes SMA parents simply b/c we're knowledgeable for the most part on what's going on with our kiddos. We know the lingo and understand how it all relates. Never wish I had to be so damn smart about this crap, know what I mean Vern? Later, taters.
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