We're at a.... dare I say it???... a slow point with Micah's treatment. We got the go ahead to stop 3 medicines yesterday (that's 7 less doses a day), switch one med from twice a day to once (that's 8 less)... We're seriously only left with 4 doses half the week and 2.....2!!!! the other half of the week. This morning, it took me like 5 minutes to realize he doesn't have morning meds this morning!
The drain is out now, so we dont have that antibiotic irritating his stomach, and let me tell you, 7 weeks of a pretty potent antibiotic... UGH!!! Not to mention the one he's been on for most of the last 6 months... I hear parents so tentative to give abx for an ear infection or something... and I can't help but think that I wish we had that luxury to worry about that.
He's off the immune suppressant, the drain is out, and his iGG is fine (for now). What? My kid has an immune system (well, maybe not quite, but soon?!) Oh wait, it's October. Doesn't matter because he doesn't get a free pass out as long as he has a trach, in my humble opinion. The (sort of) good news is that he gets synagis again this year, it's sort of like a vaccine against RSV. UNFORTUNATELY, it's monthly shots for probably the next 6 months. This mama just about had a breakdown when I heard that he qualified again. It's a torturous shot (he was upset for about 5 seconds about a flu shot, this he'll scream for), and he knows by now what's coming. And we just got past weekly bloodwork/sticks. *bangs head against the wall* Poor kid... poor mama and papa. I'm just sick of it. Sick of bringing my kid in for torturing, knowing all the while we don't have a choice. RSV can be devastating for a trach kid. Most kids you only worry about for the first year, but it's constant with a trach kid. RSV is just a specific type of cold, nothing an adult would ever have a clue about having.
He's got his yearly evaluation for First Steps this morning. It's kind of silly because he qualifies for OT, PT and Speech just because of his medical conditions, so why bother? We don't ask for the 4th type of therapy anyway! They'll probably try to convince me he doesn't need PT... Good luck with that one!
Which leaves us with our two "big" problems, his puking and his swelling. I'm hoping somehow the puking is related to all the morning meds he was on (two abx and advil). Unfortunately I know I'm wrong, LOL. In the morning the kid just can't tolerate food. We used to be able to get about 5 oz in an hour. Now we're at 4 ounces in about an hour and a half, and he's still trying to throw up (and being successful if we don't get it all back out of his stomach in time). It's baffling. We've had to increase his feedings from 3 to 4 already to accomodate the increase in volume he needs to grow.
Okay, I'm being incredibly boring to about 90 percent of you who don't live in this world. Long story short, he's got swelling in his face that leaves his eye swollen shut for the first half the day, but it goes down which says it may not be LM, just tissue swelling... but why?
That's enough of a novel, I'd say.
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