Raul had his first three appointments today, and will have three more tomorrow, then his OR day Wednesday. We got to meet with Dr. Tolar, which is something we have been wanting to do for a long time! He was very nice, and went through some background info. on the history of the BMT for EB, the process for approval, the length of stay in MN for the BMT, and discussed the next BMT protocol that they are currently working on. If Raul is approved, he would be part of this next protocol, which would give us a slightly longer time frame until transplant, but not too long luckily! Dr. Tolar will also help manage Raul's current hematology issues. Today I signed all the forms with the nurse coordinator for if/when they look for a donor. We also saw GI, who is trying to figure out how to organize a scope and possibly esophogeal dilatation by Wednesday. They wanted to up-size his g-tube so that the stoma would be dilated for them to put the scope through, but they did not have the size they needed, so that part is sort of in limbo at the moment. They may be able to get one by tomorrow, and they were also going to check in with Dr. Tolar to see specifically what he wanted them to do.
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