Tuesday, March 2, 2010

Chemo 17, Day 1.5

First, congratulations to Friend of The Boy Sarah, who had another hatchling earlier this week. Her blog - Andrew Tales (The Little Dragon) - is a daily stop for us. She posted pictures of the newest baby dragon, and she is an adorable little thing!

Today is kind of day one of chemo 17, even if we haven't started chemo until late today. Last night was kind of a rough night for The Boy - because of a very late (6PM-9PM) nap he took on Monday night, he didn't get to bed until around 12:30AM or so. He woke up at 7:30, when I had the temerity to get up from bed and go to the bathroom.

I shouldn't say that. In the hospital, he's really, really good about staying asleep when I get up. It's only at home that he won't.



He woke up because of the normal hospital hustle and bustle - the nurse coming in to do vitals, the PCT coming in to do his thing, the telephone ringing, etc. So, he was awake. We also discovered, at that time, that he wasn't actually on radiology's list to do the GFR test. Dr. Graves and the on-call residents had put the orders in, but nobody had actually told radiology. Sigh. More telephone calls ensued, and - long story short - radiology came at 8:45 to discover that no peripheral line had been installed. (Meaning, no IV line in The Boy's arm / leg / whatever.)

So, we waited for the IV team, and they came and did their thing. Thanks to the extra hydration, finding a vein was a snap, although they did not have time to use the emla cream to numb the pain. Screaming boy is not fun for any of us, and - for some reason - I actually got a little nauseous watching the whole thing. Usually I don't, but I think I actually saw some of the vein when they were messing with the needle. Ugh.

Insert radioactive stuff, come back in two hours, then another half hour and another half hour. The radiologists are cool chicks who remembered The Boy from his previous GFRs, and they brought him a Mickey Mouse coloring book (with crayons) and some Spider-Man stickers and some Spongebob Stickers. I'm proud to say that The Boy pointed out Spider-Man but didn't know Spongebob. I think I've done a good job with my son in that regard. (In the picture, Spongebob is on top because he used the Spider-Man stickers first.)



In between the 2nd and 3rd blood draw, we were given clearance to go to the playroom. We didn't know if we could because of the potential for a C-Diff recurrence (nothing back on any cultures, but not looking like it's happening despite some diarrhea earlier this week) and because of his cold. The doctors said that the cough and congestion was from the throat up, so the mayor of the playroom went to work.

We also had a speech consult, which went well. She said that The Boy had an exceptional vocabulary and quite clear speech for a child his age, with good grasp of the consonant sounds appropriate for a 2.5 year old. He was quite charming to her, which I appreciated. She recommended that he go in for follow-up evaluations every 6 months or so, so that an expert can listen to him and make sure that there are no slow-moving changes that slip past those of us that see him day-to-day.

Next up: a nutritional consult, to make sure that the probiotic pills that we have (to combat diarrhea and other bacteria losses due to chemotherapy and antibiotics) are appropriate for The Boy; physical therapy consult, to hopefully get The Boy playing and running around while he's in the hospital; and a consult with a social worker, to find a good family therapist for us. We've been in crisis mode for so long, and looks like we might be through the worst; it might just be time for us to start to re-learn how to interact with each other in a normal, extraordinary-stress-free manner.

And, of course, discussing the results of the GFR with nephrology and with our oncology team. The Wife and I think we've come to some conclusions about the direction we want The Boy's treatment to go; we'll wait before we discuss it in a public forum.



Last thing: HUGE thanks to Grandma, for giving me 10 hours at home today. I exercised, got some amazing Younger Bro time, and even got to have dinner with my wife! Plus, I got to put Younger Bro to bed, which is really, really nice. I'm at home right now, but I'm heading back to the hospital as soon as The Wife gets home from orchestra practice.

Location:S Dallas Ave,Pittsburgh,United States

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