Posted by Steph in
Chemo Round 6 & Transplant, Counts, Family, on Thursday, March 15. 2007 at
Day 2 post stem cell infusion
I don't have a printout of the counts again, but here is what I was told:
hemoglobin 11.x (good boost from the blood infusion yesterday)
When his platelets get to 20 or under he will get some....so either tomorrow or Saturday. They expect him to need blood maybe every 5 days or so and not sure on platelets yet. He hasn't gotten many platelet transfusions in the past so he might accept and keep transfustions inside longer.
I woke Asher today around 8:30am after I heard him explode into his diaper. Maybe the morphine will help stop the diahrea which he has from other drugs. He is in a fairly good mood and we have only pushed the PCA button two times. He got his nupogen shot like a champ. He gets his last dose of paliferim today. His weight is back up after two nights of TPN at 16.3 at 6:30am. His TPN will be at about 100% calories tonight.
Asher's skin is still warm but the redness (from the Paliferim) from last night is gone. Only thing is still the discoloration/redness/dryness from the thiotepa chemo, and his elbows are the worst.
PT was here and he refused to get out of bed, again. Can't blame him.
Not much else going on today. It is amazing how cooped up a private transplant hospital room can feel....it is kinda depressing here, at least that is how I feel. Just staying busy with different games with Asher and working on my Digital Paper Tearing when Asher is sleeping. Can't believe 1/2 of March is over! We're almost there!
Thanks everyone for checking on Asher like you do!
Asher hasn't requested any food today and when asked (about food or drink) he says no. When I went for lunch I got a salad from the cafeteria and a cookie and Asher said, "Oh! A cookie! I like cookies!" So I gave him a piece and he took a little nibble and that was it, held it and then gave it back to me. So, I'll just let him ask when he's up for it.
Asher's shower went okay (cept he cried before and during it - I think his skin really hurts him) and so did his dressing change. His skin is looking better and his skin tear looks OK, it won't fully heal till his counts go back up. But I really like this non-tape dressing. The nurse just wraps gauze around his chest and then uses the stretchy stuff (like they used to use on his head) to hold it in place and it is working just fine, thankfully. This will allow his skin to not get worse as his counts start to recover.
Not much nausea today; just gagged on one of the 9am mouth cares.
All of Asher's long (old) eyelashes are gone now and new ones have already started to grow in.
He has pushed his PCA button three times from 10am-1pm. The button dose is 0.3 so not huge. Glad he is remaining comfortable.
Some of his skin redness is actually still there (or back) (on his right arm, his back, etc. anywhere where he seems to have a pressure point now, weird) and the transplant doc was just in here and said she can't know for sure what it is from but the Paliferim does cause skin rashes and as long as Asher isn't itching it, they aren't worried at this point. Asher's last dose of the Paliferim was 15 minutes ago.
He's watching a TV movie now and about to have his nap.
I have taught Asher how to turn the TV on and off with the remote. Last night around 11pm he FINALLY gave in and turned off the TV and said to me, "Mom, go to sleep, I want you to go to sleep now!" It was funny. It was right when his night nurse came in to listen to Asher and stuff (I still don't understand why she did it at 11pm when usually they do it around 8pm-8:30pm). Anyway, so today he turned off the TV when he was finally ready to nap, and that was around 4pm.
He's still sleeping, even though we just got him up to weigh him. He said to me, "What are you doing?" I said, "Getting your weight." He said, "Hey, what happened to the TV?" I told him his show ended and it shut off. He said, "Hey, what happened to my train?" I said, "It's right here" (by his pillow). Then I tucked him back in and told him he could play after he wakes up and I had to go to the bathroom. He said, "Okay," and when I got back he was asleep again.
I forgot to tell this little story earlier.... After one of the nurses was here checking on Asher (around 11am) she used the little tool with a flashlight on it to look in his mouth. So then I told Asher to look in his lizard's mouth (he has this rubbery lizard (and frog) that he is VERY fond of right now). So he did. Then, when the transplant doctor came in around 2pm he told her that he looked in his lizard's mouth. She asked him, "What did you see?" He answered, "Sores." She asked him, "How can you make his sores better?" He didn't answer and she then asked if he had given his lizard mouthcare and he said no. She then told him to keep up his mouth care so his mouth would feel better.
The transplant NP came in this evening and talked to me a little while Asher slept. At one point she said to me, "What are you going to do with your girls when you have to bring Asher to clinic and it is still RSV season?" I said I hadn't thought that far ahead, that I worry about one week at a time most of the time. She then apologized for bringing it up. Truly, I do not really think about April yet. Heck, Alexa's 3rd birthday is one week away and I know we're not celebrating till Asher gets home but I still think about it. When I have no control over certain things, why think so far ahead. I have gotten woken up so much here at night that I am now really feeling the depths of sleep deprivation....I get sad and irritable when I am tired. It becomes hard to think or focus. So, one day at a time is good enough for now. April will be there when it comes.
It is so weird to be cooped up in here and hear it is 91 degrees outside and be missing it (not all bad since I'm 20 weeks pregnant and hot enough inside). I wonder if Asher's flowers are still living through the heat and afternoon sun. We're starting to really miss the girls. That reminds me, the other day Asher looked at the two photos on the dresser here in the hospital room (Asher is holding Aubree and Alexa is holding Aubree) and he said, "I love my sisters." Deep down I think he misses them way more than I even do, so that must be a whole lot!
Oh, and before his shower around 1:30pm today, Asher and I were playing SIMS2-Pets on my laptop and we made our family. Asher really enjoyed this. We forgot to add our 2 cats though before saving.
Like clockwork, about 6 hours after the Paliferim, Asher is all bright red again. I looked in Asher's mouth tonight and his tongue is all white on top....mucositis really setting in.
Asher played with his trains a little on the floor mat tonight, and a little more Sims2. Now a movie on TV....then sleep.