Posted by Steph in
Chemo Round 6 & Transplant, Counts, on Tuesday, March 27. 2007 at
Day 14 post stem cell infusion
RBC Morphology - anisocytosis (variation in size of RBC's) slight & polychromasia slight
Chest xray is clean and "quick" nose swab tests are negative (as I figured they would be....he always just gets this runny nose after aggressive chemo).
The social worker came in to talk to me this morning. We had a good talk about this and that, personal stuff to me. I know I have mentioned this in the blog before, but she said she is even going to look into counseling and my insurance for me to get me started since I said I think I will need that now that this is "over." It will never be over for me. She said something really interesting to me that I have never heard before....she said she doesn't like the words "counseling" and "therapy" because if you find the right person it is more just about "growing" in your life. Very interesting point of view. I like this social worker. Hopefully I can find someone like her on the "outside."
I think I have finally figured out where Asher's irritation is coming from....I watched him really closely this morning....first it is all the new nurses that Asher has never met....second, it is that the nurse comes in and first thing he says today is, "Asher looks great. As soon as he eats he can go home." DOWNHILL FROM THERE!! And, honestly, if one more person says the H--O--M--E word in front of Asher I'm going to lose it more than I did today. I said, "No more saying HOME in front of Asher; put up a sign on the door so every nurse and doctor knows." They haven't even switched him from IV meds to oral meds and that has to be done prior to Asher going home. Asher CAN go home on nutrition and IV fluids, and if he just can't eat yet, he can't eat. And, truly, the doctors and NP need to get on the same page and write things down they tell me because yesterday the NP told me NO fluids during the day so Asher will be more thirsty and this morning the doctor said NO WAY she would consider that, he needs fluids. Whatever, just get on the same page. I don't want to be told different things from day to day.
It really has become a point of frustration for me....the new people to Asher, the mixed messages, them telling Asher (well, me, but in front of Asher) that it is his fault he can't go home right now (that's what he hears when they say he has to eat in order to go home)....and he does try. They forgot his breakfast I guess because I actually called at 9am and it is now noon and the food just came (after it got reordered)....he has a piece of french toast in his mouth that he still hasn't spit out or swallowed. Not all kids are the same and maybe some eat, but Asher takes a bit longer I guess, so the doctors just need to deal with it. Whatever doctor is on call the week we are dealing with it or talking about going home, that's the point....
After I got frustrated, to the point of tears, with the doc (no NP today) and nurse in the room, Asher's mood completely changed. He was almost smiling, he liked his frog and lizard again, and he even started talking to the doctor (and 10 minutes earlier he had slapped her hand while she was going for his diaper and then she yelled at him for hitting her). I even told her the reason I don't talk to the doctors is because they don't stop and listen....I was trying to talk to this doctor this morning and she just kept interrupting me saying, "This is the first time you are telling us this" (the part about not to tell Asher about "home") and I said, "Yes, it is, so please let me finish telling you what I am trying to say...." Asher started to say, "Yeah, my whole family is at home. I want to tell Daddy to take lizard and frog home cuz Lexa would probably like them. And Aubree too."
It is hard to sit in the hospital when he's technically not sick anymore or receiving chemo or anything like that. For some reason I am having an especially difficult time this go round and I think it is because after 10 months we are dealing with doctors and nurses (transplant team) that truly don't know Asher and aren't really hearing what we're trying to tell them about Asher. It is a process, it is something we have to do, but it isn't easy, especially with the emotional mommy stuff I have. Most of the time I just sit and observe and keep my mouth shut, and get emotional. Usually I don't know why Asher is acting the way he is (mean to PT, slapping a doctor, not wanting a prize/new toy....) but today I figured it out.
I brought out several toys for Asher from 12pm-2pm today. We blew up a punching balloon and played catch. The first one had several holes in it and Asher had a good time laughing as I tried to blow air in and air blew out on his face. Then he played trains for a few minutes. Then he colored in his Spiderman Coloring Book that he got in the mail as a gift. I was so impressed with how well he was holding his blue crayon and he even seemed to be coloring inside the lines (course when I commented on him doing that he started going out of the lines and giggling about it). Around 2pm he started to get tired and I let him watch TV before his shower and dressing change. OT came in, a different gal than last time, with items to do an evalution on Asher's motor skills and I told her it was shower and dressing change and naptime....so....I told her either come earlier in the day one of the next few days or we'd have to do it outpatient, so guess we'll see. He's been sleeping since around 3pm.
Asher's dressing is now tegaderm again. He can have it changed every other day or every 3rd day and we can't get it wet in the shower.
The NP came in and just chatted with me....she said she was sorry she couldn't be here this morning, she was doing a transplant with another patient. She said a lot of the frustration could have been eliminated had she been here, because she has also been calling Scott every day and she does know what Scott says too, and the doctor just didn't know everything. The NP has been our one consistent person throughout the past 4 weeks. Anyway, so we talked things through .... I need to decide by tomorrow if I want to give Asher a NG tube or I want him to go home on TPN....if TPN, she only wants to see it go for a week at most. So starting tonight Asher will try to get his first oral med and then tomorrow, both of his oral meds. She also reminded me that someone needs to clean the house before Asher goes home (especially since we have had workers there)....so....I suppose I need to make the time to do that as well....his antibiotic is done Saturday....So we're looking at Asher going home sometime soon, between Thursday and Sunday most likely.
I keep telling myself we're so close to being outta here....just one more day, one more day, one day at a time. I have started a lot of blog entries, and not finished, regarding how I "feel" lately and I know there is just SO MUCH emotion in me about this being "over." I know I have a lot of fear concerning being in the "out of treatment" phase. I know I shouldn't let fear control me. I know I "should" feel happy. I know I should celebrate. But, it isn't that easy, or that simple. (Thanks Kathleen for the guestbook entry that helped me see why it is I feel this way and that I'm okay and normal....)
Thanks, to SO MANY of you, for following Asher's progress and uplifting our family in prayer!