We returned home from NIH last Tuesday with an uneventful trip. YEAH! Other than her potassium being low, things were looking good. However, she did leave them with a sputum sample, because she had been goopy. She is growing things that need treated. We will be starting with an antibiotic nebulizer twice a day and see how this goes. We hope that IV antibiotics will not be necessary. She is not feeling well and sleeping bunches. We see her heart doctor on Friday to assess things again. One of the things we get asked is "what's next" because if she is to survive a bone marrow transplant is needed or a miraculous healing. The protocol for the haplo-transplant has been submitted, and we are waiting for final approval. It takes awhile because revisions are necessary. As it is currently written, her Ejection Fraction is too low. They may need to write for an exception. A question I've asked since her heart and kidneys became involved is, "Would having the transplant done at IU where her heart and kidney vascular people are available be a better option than NIH?" At this point, it still seems that the best option would be at NIH. However, we have asked if this is an option at IU. So far, the answer is "it's not an option". The transplant doctors have not talked, so a complete understanding has not happened. We are praying that God makes it obvious where this should happen and when.
A big praise for us was when a former homeschool student who graduated from HS with Tyler messaged me with the news that they were running a Bone Marrow Drive at IU Health on behalf of Karly. She is a nurse on the BMT floor. Not only does this give us another opportunity for a perfect match, but it also gave us a contact for a transplant doctor at IU. We are hoping that the IU and NIH transplant doctors will talk and decide where this halpo will take place.
Karly completed her Sociology class with a high A. She is amazing. For now, the plan is to have fun and see what God has in store for her this summer.
Wednesday, May 21, 2014
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