Wednesday, December 23, 2009

Sleep is for the weak and change is for the better

Musical Daddy got CRAP sleep last night because people kept coming in to bug them. The Boy is getting breathing treatments every 4 hours, with CPT (chest physical therapy, I think) every 12. When I saw him this morning, he was much closer to normal even than yesterday. He was eating eggs and a bite or two of bagel with jelly, and thanks be to everything holy he decided to enjoy about 3 ounces of yogurt. That stuff might have a prayer of helping with the nasty diarrhea that he's still getting due to the antibiotics.

From the nephrology department: they decided to go ahead and play with The Boy's meds even though originally they weren't going to. That's fine--if they'd like to switch it up and try to get it right without using the strongest drug available, I'm all for it. More good news: they want him off the BiCitra if possible, or at least on a lower dosage. They may switch to a bicarbonate supplement instead, which is more difficult to dispense but is easier to tolerate. Considering that recently our attempts to give the BiCitra have caused screaming fits worse than vein-finding adventures or botched port accesses (not that we have experienced those things frequently but once is more than enough) have caused, I'm all for finding an alternate solution or at least cutting it down. My sentiment about this medication is that for the most part, his old team seemed to just up the dose and then leave it there without checking in to see if perhaps he did not require as much anymore. I'm glad to see that, particularly because he is a new patient, they are interested in seeing if perhaps there are better ways to get things done.

No major news about surgery to remove and biopsy the spot on the liver. Surgery sent a resident but that's the last I heard. This person said that The Boy's incisions looked good. Well, they should since most of them are over a year old. Musical Daddy's account of this exchange is much better than mine, as he was there.

I don't care too much about being "Home for Christmas." I have always had a strong affection for the holiday even though I am Jewish. The music is brilliant, and the displays are fun to see. Lately, though, the music has lost its luster for me, as has the holiday in general. I just don't care. My kids got presents every night of Hanukkah. My kids are being raised Jewish anyway. Were we still living close to my husband's family, I suppose we would have been included in their celebrations. As it is, we have a webchat date. I haven't listened to much holiday music even though usually I love it. I haven't actively been listening to music in general. I just turn my radio in the car to the classical station and enjoy whatever I happen to hear.

There are a lot of things for which I have lost my passion, and it is impossible to communicate that to others, particularly when I attempt to come across as a normal functioning human being. It is especially difficult for people to understand how hard things are when they don't even try and would prefer to judge from afar, and pass their sentiments along to others. But I digress.

My mother is at the hospital now. Musical Daddy is sleeping and will probably do so all day. I am waiting for Meatball to wake up so that I can feed him and then take him with me to spend most of the rest of the day with The Boy.

1 comment:

Sarah R said...

I hope the med changes help. As always, you will be in my thoughts. :)