Questions for the doctor tomorrow
Why are only the white cells positively effected by the blood booster shot and not the others.
How can the blood booster shot work at all when the marrow isn't supposed to be producing that much and again why only whites?
Tell me about Epoeitin, the drug that targets red cell production. Why isn't it used for Aplastic Anemia?
Riley and I went for a walk today. I couldn't tell if he was board or really just winded. We didn't get very far before he asked to sit down on the sidewalk for a rest. I couldn't get a straight answer from him. Could it be all this home bound activity is causing him to lose fitness or is he losing energy for other reasons? I think I will try the athletic club down the road after tomorrow. If we go during off hours and wipe down the equipment, maybe he can get some real exercise. He likes the excercycles and the tread mills. The novelty might keep him occupied for a while. I will see what the doctor says tomorrow.
Last night I went out to PTA. We probably spent 15 minutes on PTA and the rest was just chatting. It was so nice to be out. One of my friends dropped off her son to play x box while I was gone. The boys loved it. Being a school night made it extra special. My friend asked how it was leaving Riley. I said as long as I am close by for a phone call and quick return I was comfortable with leaving him for short times. My neighbor is also a home mom so I check to see if her car is around when I leave. knowing she is home makes me more comfortable while I am out. Riley knows he can go to her in an emergency, bloody nose or what ever. she knows my number and how to respond properly to an emergency.
We still have the EPI pin but have never had to use it. I showed it to Trevor and where we keep it. He is my back up when he is home. Trevor and I went to the library yesterday after school. he checked out a book and put holds on a few he was looking for.
The cat last week came down with a rash on his belly. I didn't notice until Wednesday and Thursday was hospital day. We were busy Friday and then had company for the weekend.
I put a cone around the cat's neck, the kind that keep them from licking. He could get to some areas but not all. I then put bag balm on his sores to make him comfortable until I could get him to the doctor. Finally, I got him in.
Fleas, the cat is allergic to fleas. He is on Advantage, but one bite, one flea sends him over the edge. He was tearing out his fur to get to the fleas. he didn't even have very many. The vet found one. He said allergic animals usually don't have many because they get rid of them quickly. He treated the cat for tape worms because eating the fleas gives cats tape worms. He sent home a tape worm pill for our other cat and Revolution flea treatment for both cats.
So, now the animal's bugs are resistant to treatment. I have to say if Riley is living in a house full of these issues and germs, his body must be pretty resilient in some ways.
While at the vets I had to apologize for taking a week to get the cat in to see him. I had also rescheduled twice while trying to bring in the cat. We also talked about Riley. The vet said he was a donor. he even pulled out his card to show me. He said it was old and he didn't even know if it was still good anymore. I told him he could check. I said we supposedly have three good donors to choose from on the list. They don't know it yet, but end of May someone may get a call unless Riley's numbers start turning soon.
The charts, other than the whites and and ANC are still the same old same old. Crash then transfusion to livable numbers then crash again. ANC is the Grans, which is a percentage number of new neutrophiles or new cells. A normal person is constantly replacing old and dieing cells. Since Riley's body stopped doing that for a while, he is way behind. Like putting drops of water into an empty cup that needs filling.
We are keeping it full artificially, with the transfusions. But say that cup is in the hot sun and the water is evaporating and we only have a small stopper to use to refill it, that is how I imagine Riley's body is working. Its an uphill battle to stay ahead of the dieing cells when he is only spitting out a few new cells at a time rather than the torrent that is needed. Once his body kicks into gear, life will be good again.
I am bummed that the doctor put us off a month, but if you do the math March, April, May, three months, he's right. Riley didn't get out of the hospital until February 27. It just pushes right up to our trip. We may just have to do a transfusion before we go and just do it.
We can deal with what ever decisions we are going to make, after we get back. Kind of like what we told the Make a Wish Foundation. We put them off making a decision until after May also. Maybe by the time we get around to that trip everyone will be well and healthy.
If we didn't have these challenges we wouldn't appreciate the good days when they come.
I'll let you know what the numbers are tomorrow. I will be curious if Riley needs red cells to counter his tiredness. Is it due to low red and lack of oxygen or is it just he is getting way out of shape from lack of exercise?
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Don't forget depression can also do those things to a body. It can be a tricky one to spot to, change can be slow and easy to miss. If anyone suggests meds, please be very careful. See a specialist. Dr's are not one size fits all even if they deal with it as part of a illness it is still truly out of their field. Some antidepressants are addicting.
ReplyDeleteI would think having to always be careful and wiping things down would soon not just get old but be depressing in itself. The fact that something is needed and understandable is not enough to off set what such drastic changes in your life can do to the mind and body.
You could make arrangements to have things cleaned before you go in, but you never know for sure it was done and done right. To have faith and trust in others can be hard at times as it is. They also go out the window when your talking about life and death. Its a lot for an adult to deal with, to be a child and have to deal with it has to have some effect.