Posted by Steph in
Hospital Stay, on Monday, July 24. 2006 at
Overall the doctors and nurses there do not specialize or know much about oncology. Asher is ONLY in PICU because he has the drain (instead of the shunt). He isn't considered sick. We actually had a doctor tell us yesterday, "Asher is the healthiest kid on this floor." Later that sunk in and Scott and I felt upset....what do you mean!! Our son has cancer and he is not feeling well and is in pain right now!
You should have seen Scott and me going to several doctors and nurses in PICU yesterday just trying to get his anti-nausea medicine back the way we were doing it on 2nd floor. One doctor actually told us Ativan wasn't used for nausea and then walked out before we finished talking. Asher vomitted three times yesterday.
Later Lindy (his day nurse yesterday) told me Asher was going through anxiety not pain and didn't need morphine....instead of getting pissed off (like I felt) I waited a few minutes then went and told her I wanted the morphine now and then she said ok. I said the night after his sugery that I wanted him to have it for two full days and I didn't find out till noon Sunday that he didn't have any that day yet. I was thinking no wonder he looked horrible!! I wondered why no one cared what I asked for.
Right after he got the morphine he asked for his puzzle and we played and then I went up to 2nd floor to get his favorite fishing game and we played that. But, I didn't realize morphine only lasts 1 1/2-2 hours for him. He didn't get the next dose till 6:30pm, six hours later, again, after I had to ask for it! Then he looked pretty good and we played for over an hour, fishing and his lock puzzle. At least part of that time he had been napping so not suffering in pain too horrible.
I have been at the hospital for two days, so much where I haven't seen Alexa in two days now. I feel like I need to be there now because I don't trust the PICU team to take care of Asher in the best possible way....I hope I can get over this because having Scott and I both at the hospital all day long isn't what works the best for our entire family. Scott went home to mow yesterday and see the girls and run an errand. For some reason I feel I can't take charge when he's there and when he's not there I speak up more. I guess Scott has taken "charge" of things there, but I do think Asher needs me to see his emotional needs, to see his pain and stand up for him.
Alisa, a great oncology nurse actually came to PICU yesterday to say hi to Asher. She told him she missed him. I thought that was very sweet but it made me cry. I realized there is only a select few people at the hospital who have this deep compassion for my Asher. Who really care about him and us. Asher looked horrible and in pain when she came and she said she wanted to make sure he was being kept comfortable....
The night nurse, Mark, worked as a manager on the oncology floor until he decided he wanted to do more patient care and quit to go to PICU. Glad to have him last night. He explained a lot to me and wasn't "stand-offish" where I felt like I could talk to him and ask questions. I realized there are so many side affects of this chemo that we just didn't know about. When we told him he looked to be in pain he agreed and said he would give the morphine every two hours for it, after explaining how it peaked and how it worked for pain.
Dana, nurse from Saturday night, came to say Hi to Asher Sunday too.
The bad thing is we will be in PICU about 14 days. I am really hoping we find comfort in the nursing care we will be receiving. I pray for that.
Posted by Scott in
Chemo Round 1, Infection, on Monday, July 24. 2006 at
If we continue on this no-fever trend and the bacteria cultures come back clean, we'll be able to drop one of the Prophylaxis antibiotics we are getting (Vankomycin, Gentamicin, Cefepime) and be back down to two. We're on all of these, because in medical terms, Asher is Neutropenic right now. Meaning that his infection fighting ability is virtually zero because the chemotherapy has taken out his white cells.
Asher got a pint of blood today because his Hemoglobin was low.
Asher's mouth sores appear to be worse today and he is now getting Morphine every 2 hours so that we can try and remove some of the worst of it. Once his white blood cells come back, his sores will start to heal, until then the only thing we can do is give him the liquid medicines and stop the worse mouth infections from happening (thrush, yeast infection).
TPN is going good, and his CSF is still crystal clear from his drain.
We're really hoping that we won't need the Shunt back. On wednesday, we'll be raising the pressure on the Drain to see how it reacts. Shunt surgery could put us farther behind....
Thank you for your continued prayers.