Monday, October 27, 2014
Day +88 Talk about a stressful day. So last night We noticed a rash on Katlyn's arms. It looked all too familiar. Katlyn absolutely hates when we put cream on her at all, but we fought with her to put some steroid cream on. I could tel just looking at the rash, it was a serious matter. So we took pictures and put the cream on and went to bed. So neither Johnathan or I barely slept all night because of this rash. The worry was real. This morning when I woke up the rash was still there but actually had improved. I immedietly sent the doctor a message letter her know about the rash and comparison pictures from last night and this morning. Then I paced the floor. Johnathan was at work at the time. I kept checking Katlyns temperature, and although she never reached 38 I kept checking. It was pretty warm in here, and her temperature was warmer than normal. She had the usual "not feeling good" look as usual. I felt sick. I knew I should be taking a shower because I was almost sure we would be headed to the hospital. I could not leave Katlyn though. I was way too worried. I waited exactly an hour and then called the doctor. She said she was pretty certain it was gvhd and that we could continue to put the stteroid cream on the rash and we would reassess tomorrow. Depending on the rash we may increase her prednisone. We definelty will not decrease the prednisone this week. We knew that this could happen. When weening prednisone, it is possible to have a flare up again. So far though, it seems to be getting much better today. Besides that, we need to change the dosage of one of Katlyn's medications as her level is too low. This medication is available in 250 mg capsules, and 500 mg tablets. With Katlyn's new dose we cannot use either of these. It will have to be liquid formulation. So this morning I was trying to figure out how we were going to get this liquid formulation. Sometimes you have to get medication compounded and with anti rejection drugs, they have to be done under a special hood so that the pharmacist is not inhaling the medication. In our area there are two pharmacies that have access to a hood. The first pharmacy said it would take them about a week to make the medication, which we needed two days ago and the second pharmacy said they were waiting to hear from the IWK about the recipe. Me being me, I couldn't wait, so I called the pharmacy myself asked if they could contact the pharmacy for me so we could get this done quickly. I'm not sure why anyone thought that this drug had to be compouded, as the IWK informed me that there was a commercially available liquid form. Well that solved a lot of problems. So our local pharmacy will be stocking this medication for Katlyn and I will be able to get it tomorrow. But then came my next problem. The pharmacy advised us that there was a problem with the billing. Basically it was just a technicality and needed some special authorizaton, but I was so relieved to learn that it has been approved. Anti rejection medications are not cheap. I knew it would be covered, but I still cannot help but stress. Meanwhile Katlyn's doctor sends me outstanding news that once again her chemerism test is 100 % donor cells. This is awesome!!!!!!!!!!! She is eating and drinking well and we are blessed with her little smile more and more. God is good. Please continue to keep Katlyn in your prayers. She does still have that terrible virus causing her to cough a lot and then the norovirus. We need this rash to be resolved quickly. And then we need for her platelets to also come up also (we will be rechecking that on wednesday.