Sunday, February 22, 2015

Winter Updates

Back in January Raul got a new mattress for his medical bed! We are the third family to use this bed, so the mattress had gotten pretty bad, and we were using a zippered cover to keep the old one enclosed while we waited. It is very nice to have a new mattress, and they were able to get him one that reduces pressure on his body, too. He was very happy about his new mattress, and demanded to sit on it for a while after it was delivered! 

In the last couple months we have been trying to figure out Raul's anemia, and how to get his infusions in before he gets too severely anemic, which has been happening more quickly lately. Raul had an iron infusion on 1/20, after having been symptomatic for a couple weeks (we got on the cancellation list, but couldn't get an infusion slot any earlier). That day they drew labs, and when those came back we decided that he was low enough that he needed blood as well, so he had a blood transfusion 1/22. At that time it also appeared he was not making as many new red blood cells, so the doctor ran a test for Parvovirus, which can slow/stop red blood cell production temporarily, but he did not have that. This will be something that we will watch over time.

 The weekend following that he started having viral symptoms, which we believe to have been RSV due to a positive test on my foster baby. He got a very bad cough from the virus, and would vomit when coughing or lying down. Thankfully after a week he was mostly better, but the virus had set off increased inflammation in his body, causing him extreme joint pain, and worsening some of his large wounds. Just this weekend, almost a month later, the joint pain finally seems to be significantly improved!

Shortly after recovering from the virus he started to show symptoms like he had the last time he was very anemic, so we ran labs, and thankfully that was not the issue (it had only been about 2.5 weeks since his iron and blood, so it would have been concerning if his anemia was already bad again). However, even on those labs it is evident that he is becoming more anemic more quickly than in the past. His doctor agreed that he likely needs the iron more often, so we will try to do every 4 weeks or so. We had planned to go to Cincinnati at the start of this past week for more grafting, but our flight was canceled due to snow, so we were unable. We also would have done his next iron infusion at that time, but now will have to wait until March 10th, unless we can get it done in MN.

We fly out Friday to MN for the initial consults and tests for their bone marrow transplant trial for severe EB. We will be seeing several doctors/specialists, as well as having skin biopsies, a bone marrow biopsy (to compare to his abnormal one from last summer), and possibly a GI scope and esophogeal dilation. Raul is excited about this trip, as he has big plans for everything he wants to see/do at the Mall of America! He is also hoping to meet at least one other child with EB, and somewhat understands that there is a doctor there that may be able to help his "owies" (though I have made sure to explain that this trip is just to talk to the doctors, we would have to go back for any treatment).

1 comment:

  1. Jax who has EB is currently in MN. Do you know them?