The increase in Peter's counts on Friday had us hoping he would be discharged by now, but sadly we are all still here in the hospital. :-( His counts went from 3,000 (Thursday) to 15,000 (Friday, yay!) to 5,000 (Sunday, boo!) to 11,000 (Monday). Ugh. Obviously, the last few days have been a bit of a roller coaster for us, as we've gone from "Peter's going home! He's getting better!" to "Are the steroids even working? Is he going to get better?" At the present instant, we are both thinking "the steroids are working, but they need to work better." Peter's red blood cell counts have been consistently very good and the platelet counts are higher than they had been. The doctors need to see his platelet numbers go up more (recall that a normal platelet count would be around 200,000) and show some stability before they are comfortable releasing him.
Putting that all together, Wednesday is looking like the next big decision day for us. If Peter's counts haven't gone up more by then then the steroids probably aren't doing enough to slow down his immune system. Thus, we'll have to start considering a plan B for treatment. This might be a higher dose of steroids, or it might be some other medication altogether. On the other hand, if Peter's counts do go up further, that would suggest the steroids are working at the present dosage. In that case, it is possible he could be discharged mid-week and just continue the steroid treatments at home. In either case, none of the medications on the table will cure Peter but hopefully they will manage his symptoms.
We had a number of visitors over the weekend, which was a welcome change. The most common comment was "Oh, Peter looks so healthy, he must be getting better!" Which made us realize we haven't included any pictures of Peter in these emails. So I'm attaching one here that I took on Sunday. He looks just as cute as always. You can see one of the tiny bruises (petechia) on his cheek, but otherwise he has always looked pretty normal. So you can understand why I am grateful that Elisa noticed something was wrong.
The other frequently asked question was "what is Evans Syndrome again?" The confusion is compounded by the fact that if you google "Evans Syndrome" the number one hit (evanssyndrome.org) is a confusing, completely unhelpful website. In looking for information about Evans, we've had poor luck. Elisa found one Facebook group (Evans Syndrome Community Network) that she thinks is pretty good. Otherwise, we have used the fact that Evans syndrome means that Peter has two conditions - Throbocytopenia (ITP) and hemolytic anemia (AIHA) - and so we can get a good snapshot of his condition just by reading about both of those and superimposing the information. So for those of you who like to worry scientifically, you can use the wikipedia pages on AIHA and ITP as starting points. <smiles>
We are so grateful for all the prayers that people have been offering up on our behalf. For those of you who are praying, we'd appreciate your prayers for:
Peter - That his platelet counts would go up and stay up and that God would continue to keep him safe.
Troy - That God would give him hope.
Elisa - That she would have peace and feel less overwhelmed.
Lydia - That she would still feel loved, even while Peter gets so much attention.
Thanks for walking this road with us.
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