Sunday evening, Azer threw up, around the time when his feed ended. He didn't have a fever, and it didn't look like he threw up much, so I thought it was reflux or something. So, I forced us all to get up for school in the morning even though I was just dragging.
Monday night, he threw up a lot. It looked like the entire feed, but of course you can never tell because of how it spreads out. Well, I took his temperature and it was 102.1. No school. He had a CF clinic appointment Tuesday morning, so that was lucky.
Tuesday I was so tired, I cannot even begin to describe it. I always feel like laughing at other people who say, "Oh, I'm so tired, I went to bed late". Another mother recently told me, "Oh boy, I'm so tired, because I chase my two kids around all day, and one of them woke up in the middle of the night." I'm sure she is tired, but, it cannot be even close to the same kind of tired I was Tuesday.
Azer did his PFT's. His first few tries didn't get him much higher than 60% FEV1. I was about to really start flipping out, but he managed to get an 81% which isn't too bad, since he usually baselines around the upper 70's.
He lost a few pounds, he's around 48 lbs. Not terrible, but I don't get how he can loose weight being on the G-tube.
They looked at his previous throat culture, and it was nothing more than staph, but the doctor felt it would be best for Azer if he did another cycle of Tobi. They also prescribed an oral antibiotic we've never tried before.
Before we left, they did a chest X-ray, just in case. I don't know how that will look, but they said he sounded clear, but that doesn't mean much to me. Once, he had pneumonia and they said he sounded clear. I believe this is because the air can move around the infected spots and it "sounds" clear.
So we leave the hospital, and drive to a local pharmacy to fill the prescription for the antibiotic. The pharmacist said they don't carry it. She calls another pharmacy and they might have it. So, I drive over there. Nope, they don't have it. I drive to another pharmacy. They say that this antibiotic doesn't exist in the prescribed strength. Great. So, now it supposedly doesn't even exist? I try two other pharmacies. No such luck.
At this point, I'm so tired, I can't even speak straight. It's now evening, and we haven't had anything to eat yet. So, we drive ALL THE WAY back to the hospital, and try the pharmacy there. Yes, they have it. They are the only ones apparently that carry this strange antibiotic. The pharmacist seemed surprised that other pharmacies didn't carry it. It took 40 minutes for them to fill it, but eventually we got it.
By the time we got home, it was about 7:30pm. I just broke down and cried just out of pure exhaustion. I don't know why, but I just couldn't stop crying through the whole evening. The next morning, when I woke up to get the kids ready for school, I looked in the mirror and I looked half-dead.
Well, anyway, I think the antibiotics are working. He hasn't thrown up since we started them. Funny thing: I was reading the label on the bottle of antibiotics. The course is for 15 days, but they only gave me 10 days worth because it expires in 10 days. I have to drive all the way back to the hospital to refill it next week. I laughed out loud at that one, in a sarcastic way.
Thursday, both of the kids had a pediatrician appointment. At the same hospital. Yeah, I'm getting sick and tired of that building. It was a normal well-child appointment. And I never expect the just-out-of-school residency doctors to know that much. But apparently, it seems Azer is spending way too much time on the video games, TV, and computer. In one day, he spends a weeks worth of time watching TV (according to the American Pediatric whatever that tells people how to raise their kids). I looked that doctor in the eyes and I said, what am I supposed to do with him when he's stuck to machines for a couple hours a day? "Well, ma'am, you could sit with him and read books. Or he could read the books himself. His intelligence will be dumbed down by all of these video games." I think my intelligence is being dumbed down by watching Sponge Bob for the past 5 years. But, honestly? Sit there and read books everyday for a few hours a day? In theory, great idea. I didn't know what to say in response so I just smiled back at the doctor and laughed to myself. Of course I read books to my kids every single day. At least 2 or 3 a day. But for a few hours? Umm ... no. Not happening, Dr. Genius.
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