We actually tack the days by doing a count down to the actual transplant and then transplant day is day 0 and the following day is Day 1. So for the next few days I will be counting down in my headings instead of up. Sorry for any confusion.
So there will probably be another post later tonight. Yesterday ended up being a pretty eventful day, darn. The t-cell killer medicine that she got ended up being horrible. She reacted to it. She spiked a 103 degree fever and began vomiting a lot. She turned grey, and I mean really grey. She wanted me to lay by her the entire day, but I wasn't allowed to touch her or move. It was a really long day. The medicine was suppose to go over 8 hours, but we ended up slowing it down so it went over 10 hours. By slowing it down it helped her body to stop reacting so much to it. It helped and by evening she was feeling great. She was even allowed to put on a mask and go ride a tricycle through the hallways. She was having a blast and riding so fast, honestly I had to walk fast to keep up. She was having a blast and then she got tired. We went and laid down and the fever came back and upset tummy. I guess she can react to the med for 48 hours after, because this morning she has started again, but this time she has a red blotchy rash too and we're just getting ready to start her next dose. Its going to be a very long couple of days, but she has to get the medicine.
The other weird thing going on, is her counts are actually going up. We expected her to be neutropenic today, which means no immune system, but she actually has really good numbers today. They have been slowly going up the last few days, supposedly that can happen, but today is a huge jump up in her numbers. Her white count and her ANC are actually on the high end of normal and above normal. I'm waiting for the Doc to come in and explain, the nurse hypothesized that the meds are just pulling all the remaining neutrophils (those are the immune blood cells) out of the her body into her blood stream. Like her body is doing a last ditch effort to save itself. Then we'll see a huge plunge down, but I have to say I'm not too sure about that. We need her counts to be 0 and her bone marrow to be gone so that we can replace it with the new cells on Thursday, I'm feeling a little nervous about what is going on with her numbers, but hopefully the Doc will be in soon and give us a good explanation.
So like I said I will probably be reposting later today or tonight with more info, unless she is just too sick to get away from her. Craig and I are suppose to be trading out today, but he was worried that he was starting to feel a little sick last night, so we'll see. I don't want to take any chance with her. I have finally turned the corner and am feeling well, I've had a few lingering symptoms from the cold I had last week. But I am feeling great today.
Monday, June 22, 2009
Day -3 I have been tracking the days wrong!
Posted by Jenell at 8:49 AM
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3 comments:
Oh my goodness. The things she has to go through are not things any child should have to-or any parent for that matter. You guys are just remarkable the way you face it all and still hold it all together. She is SO amazing and we will just pray she has more good than bad moments such as riding her bike up and down the hallways. Grace was able to do that once when she stayed there and she LOVED it! I'm glad you're feeling better, too!
It's funny how all of this sometimes seems normal. It only takes me a second to remember a memory of all of us before this to be reminded of how far down this road we've come. I can't wait to not know what her counts are=) and when a short ride on a tricycle brings me to tears because I know how much joy she gets from riding and feeling "normal". Well for now this is our fate and I will relish the days or hours that are uneventful.
People sometimes ask us "How do you do it?", referring to our 4 young kids, and I think silently, "Its because we have no other choice, and even then we don't always do it so well". I imagine that is how you feel too, only much more so.
Hang in there!
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