Today's bout was not as bad as yesterday--the weird taste is not so bad, and the tremors/ tiredness as not as bad as yesterday. My face is really flushed, however, and feels warm, so I hope I don't have a fever. The nurses took my temp at the end of the infusion and it was OK, so I don't think that's it.
The only real issue is that my lower lobes (the bottoms of your lungs) are really, really sore. Julie and I think it's from the coughing from the 1) bronch and 2) the aerosol drugs. I am getting up a lot of stuff, mostly from the bronch, which is good, but it also hurts. Doing the aerosol also hurts because it's opening passages that are 1) already open to the point of pain and 2) causing more coughing, which leads to--you guessed it!--more pain!! woohoo! But as long as it doesn't get too bad (it's about a 5 on the 1-10 scale), I'll be OK. Julie did say to call if it gets worse. And the shortness of breath is still an issue, but hopefully we can start to see some changes there.
Last (hopefully!) infusion tomorrow but it's at home (oh lovely Children's Homecare nurses!) so that's good, and it's at 1:00, which is also good. My port behaved today and we didn't have to re-access so I hope it does the same tomorrow. it's been a real bug-a-bear lately.
Sats, last time I checked, were 98 and my heart rate seems to be settling down. It was really high (like 150, 140) after the treatment and now it's about 122, which is still high but not as high. So I'll take that. And my blood sugar levels are all wacky, but I'm doing the best I can--that is totally because of the steroids. Oh, the joy. I see Dr. A again on Monday so hopefully things are good!