UPDATE: We are packing up and heading out as soon as we can get meds taken care of. 😊 In the back of my mind, I do wonder if he's truly ready, but I think that's anxiety talking. If I listened to her, we'd never leave.
We had visitors yesterday!It was a rough game for the "good guys." Both sets of our "good guys." Both BYU and the U of U lost pretty badly, but the U's game was right here so afterwards, Mary, Michael, and Livi came to say "hi." It was fun to see them and chat for a little bit, and I think it did Aaron good to see faces besides mine. Plus it gave them a chance to warm up. (It's cold out there!)
But Aaron? Where are we?
Well, we're still on the floor. Yesterday I wondered if we'd stay here. He had an issue during the afternoon where he ended up on 15 liters and then had to be bagged, and even then wasn't really interested in coming back up. The doctor came and we gave an emergency dose of his heart med (which he really loves!) and things settled out.
In fact, they "settled out" so well that instead of mid to high 60's on 15 liters, he was high 80's to low 90's on 6. Serious change!
And the rest of the day went just fine. This morning we pulled labs again and his white blood count is down further. It's actually back in the normal range again! It turns out (don't know why I didn't think to look at this before) that pulmonary hypertension can influence white blood counts. I mean, the WBC is mostly a stress or inflammatory marker so it makes sense. And we know that when he's getting over a virus or infection his PH spikes.
I think we've worked it out, although we're not sure what "it" was exactly. I mean, he grew out "stuff" from his trach and he did get better with the antibiotics, but there's still the question of what exactly it was. We have (yet another) game plan for him. A new inhaled antibiotic was intended only for symptomatic use, meaning that we would only use it when he has symptoms of tracheitis. We don't want him to become resistant to that, too. But at the same time, he needs to not be getting repeated infections every few weeks. So now we will use it cyclically, 4 weeks on/4 weeks off, until we can space his hospital admits farther apart.
I'm hopeful this will work. Years ago when we started Tobramycin, he had been hospitalized four times in five months. We went almost two years before his next pneumonia. There were other things in there, including a few surgeries, but no pneumonias.
He needs to have a long healthy spell to gain back what he's lost the last couple years. They've been pretty rough.
So the plan is to watch for the morning and into the afternoon and then head home. Fingers crossed....
No comments:
Post a Comment