Friday, March 25, 2016

Day +171

On Wednesday Raul had his GJ tube placed and had his 6 month post-BMT tests. During his blister test, the blister started at 15 seconds, but took over two minutes to completely blister! In the past they have all only taken around 40 seconds, so hopefully this means his skin is getting stronger! It will take a bit longer to hear about the percentage of donor cells in his skin and how much collagen 7 there is. His GJ is working well, and we are slowly increasing his feeds.

Unfortunately, the last few days have been rough, and Raul has been pretty unhappy. Along with everything else, we think he is likely just bored and frustrated, so we are trying to think of different things to do. This afternoon we took a short walk, and stood outside for a couple minutes of fresh air. He did seem calmer when we were outside. Hopefully soon we can cut down on the number of IV pumps he has to make it easier to walk around!

Raul's soluble IL2, an HLH marker, this week was about double what it was last week. It went from the mid 3,000s to low 7,000s. Some fluctuation is normal, but this was quite a bit higher. They will not officially make any conclusions based off this one result, so we will have to see what it is next week before making any big decisions. For now we went back up slightly on his steroid and will keep his CSA dose therapeutic (we were considering weaning it again). He has had a few fevers, but not constant at least! It is possible that some of his fussiness is just feeling overall crummy. 


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