|Leaving the ER last Monday night.|
Even Aaron has gotten into the act. Last night he "napped" from about 12:30 to 2:00. Yes, a.m. But he has been awake most of the day, so maybe he'll get his days and nights straightened out. A mama can hope, right?
That's all about to change, and it's going to be painful. Bright and early (or at least early) Tuesday morning, alarms will blare, we'll rub bleary eyes, and stumble upstairs. At least I hope it goes that way. School starts, soccer starts, piano will start shortly, and the whirlwind begins. But it will be good to get some rhythm and routine back.
Aaron doesn't actually start for another week. So he'll get to hang out at home with mama while we work on getting our stride back. Which is probably good. He's been having his own version of "fun" lately. We've had to rescue him several times (meaning twice a day, then not the next day, then twice the third day, and so on) for the past couple of weeks.
And a week ago, early on Monday morning, he started in with another asthma attack while still sleeping. Not good. So given that there were signs of cardio involvement, too, I threw in the towel and took him up to Primary's on Monday afternoon. The good new is his heart looks great! The even better news is, that after spending over six hours in the ER, we came HOME! We ran tests, came up with a plan, and because he was stable, came home. That doesn't happen very often.
One of the tests was to measure a protein the brain puts out to help the heart work. Under 100 is considered normal. Aaron usually hangs out in the 130's to 160's as a matter of course. 100-300 means the heart is working harder. Above 300 is mild heart failure and so on. This time, Aaron was at 87. Yeah, actually down in the real normal range, not just his normal. Let me tell you, that was reassuring.
On Wednesday, we were back up there for a clinic visit with the pulmonologist. Frankly, having to rescue him so many times just isn't good. At some point, it's not going to work. So now, we've got two more meds (because we didn't have enough already, obviously). One is a short-term oral steroid that he's finish using tomorrow. The other one will work on his asthma from a systemic approach and he gets it through his g-tube.
So now we're up to two heart medications, four asthma medications (one taken only when needed as a rescue med), thyroid medication, reflux medication, vitamin, and fluoride, plus a probiotic and coconut oil. And most are taken more than once a day. Planning outings can really get interesting. One of the good things about his school schedule is that the only time he eats at school, he has no medications scheduled.
Like I said, the insanity continues. But it's all good. It keeps us on our toes.