Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Monday, March 12. 2007 at
On the second day of rest, Asher will be doing pretty much just that - resting.
We got his morning labs back and his liver has already started to recover. The doctor is feeling confident that it's just the chemo drugs and not anything else.
The only new concern is that Asher's thrown up twice, Bile both times. Last night at 12:30 and this morning at 9:15am. Very small bit of liquid and this morning's had a bit of sluff in it, so the mucositis probably has set in on his stomach.
Counts from 04:30
Uric acid 1.6
Alkaline Phosphatase 163
Notes from the Doctor this morning. There may be more later on in the day.
Asher's AST/ALT has decreased, so it appears his liver is recovering itself.
Infusion of cells tomorrow is targeted around 10am. She's not real concerned about me going to work and back from the hospital, but if I show any 'different' signs that I might have picked something up, that I shouldn't come. I'll probably lock myself in my office pretty much over the next few weeks.
On a side note, I just received word from our doctor that the Head Start III protocol that Asher participated in, has been suspended due to the toxicity observed of the chemotherapy drugs given. They're revisiting the risk/reward of the dosages of the drugs and will reopen once they have it adjusted. All existing kids continue on their path apparently if they've already started. Thankfully we're beyond that and just have the 'standard' autologous stem cell transplant left!
Steph is coming to the hospital today to switch off and she'll be staying most of the time from this point on, most probably. I'll be returning to work and be at home over the next couple of weeks dealing with some home warranty issues.
Asher wanted to eat my salad that I had for lunch...he kept saying, "That looks yummy." But, I knew he couldn't have salad. He wanted to order food, so he asked for chicken nuggets and cheeseburger from room service. In the mean time he ate about 4 shortbread girl scout cookies. We all know PCH food isn't the same as McD's and when it did arrive he took one look and made a gagging noise and said he wanted Daddy to bring it. I said he couldn't and then we cuddled and Asher fell asleep on me around 1pm and slept from 1pm till 2pm when a nurse came in to draw blood to check his counts. She said they need to check levels in case he needs blood before his transplant tomorrow. She said maybe if the hemoglobin goes below 8.0 he will need blood tonight....but it was only 8.4. The transplant NP just came in and said maybe the transplant doctor will change her mind and give blood overnight or it will have to wait till after transplant later tomorrow, can't have it at the same time.
I tried to do mouth care with Asher (after 'forgetting' to do it 2 times earlier) and after the first swish and spit (well, skipping the salt water and going right to the biotene) he threw up, a bunch of bile and stuff (mucositis stuff). Right when he was done he said, "I need hotdogs. That would make me very happy." So, I ordered them for him from room service, and now he's talking and sitting up and happy (he said he wants to shower after he eats)....he was pretty out of it all day, although did play Zingo, playdoh, gameboy and sit with me and watch TV.
Anyway...come to find out the Zofran stopped sometime yesterday and Scott didn't know this (nor did I today till just now). That would explain why he is now so sick to his stomach and throwing up, so it is added back q4. I guess they didn't do it on purpose (although that is coming from a nurse who is guessing), just didn't put it back on orders once the chemo finished. I guess most kids don't continue Zofran after chemo is done but we have learned (through many rounds and months) that Asher needs it all the way till his counts start to go back up. So...I feel bad we didn't notice it but hopefully now Asher can feel better!
Will update a bit later when Asher is asleep, because I talked to two ladies today about what will happen for the transplant tomorrow, even saw photos of what will happen. Nice to know this ahead of time, and I look forward to taking my own photos.
So Asher ate about 1/4 of his hot dog with ketchup and he drank about 3 oz of 2% milk. Then I noticed he was getting really tired and it was 7:40 so I called Scott to find out when his last shower/dressing change was. I assumed it was at 3:30am and 9:30am prior, however, it was actually 9:30pm Sunday night, not today at all. But, Asher was so tired he was watching a movie and fell asleep and the night nurse didn't come in until 8:25pm to tell me to get him up and shower him so he can have his dressing change. I was not happy, especially when it was being made a big deal now when it wasn't at 3:30am when he was supposed to be up and showering (due to the Thiotepa excreeting for at least 36 hours after it finished, which was 4pm Saturday). But, I woke him up, showered him and the nurse changed his sheets and then did his dressing change. It was at this time that I realized the "two pieces of tape" on his broviac was not in place, but a "regular" gauze dressing was in place with tape around the ENTIRE edge (5+ inches square). Well, in taking it off the nurse pulled skin off with it in at least two spots that I saw, both drawing blood. So, now he has wounds that I am going to worry about as his counts drop this week and nurses are continually accessing during dressing change. Even when I told tonight's nurse (which I just found out was the same nurse as last night) that the tape wasn't supposed to be in the same place every dressing change (every 6 hours until this morning and then every 24 hours again) she still put the tape over the red/raw skin in the exact same place....arg....anyway....I'm frustrated....I feel like I can't trust what is being told to me. You'd think they have done this before and I wouldn't get so many different stories about one part of last week's chemo. I guess I shake it off because tomorrow is a big day.
It is now 10pm and Asher is still awake after getting woke up for a shower....he's exhausted (only 1 hour nap today and then 1/2 hour sleep before his shower) and hungry (he asked for a hot dog which I couldn't give him and he wouldn't eat a lunchable, although he did drink about 1 oz of milk). Since he was still awake I did another mouth care with him (since he threw up the only two that were attempted earlier today). he did the biotene, swish and spit, and then the nystatin, swish and swallow and when he was done he said, "I like doing my mouth care now." No kidding. Wow. What a kid!
Tonight he is getting two antinausea meds and they will draw blood around 2am to check hemoglobin and if it is lower than 8.0 he will get a unit of blood at 5am to be done by 8am.