Anyway, today is day +124 after transplant (135 days since we arrived here) and I was sure we'd be headed home by now. I was wrong. Up until a few weeks ago Kiah had a relatively smooth transplant process with a few bumps along the way but there was no real reason to expect that we wouldn't be transitioning home at this point. Then a couple weeks back he began having trouble maintaining his platelets and is currently needing transfusions everyday. His body is making platelets but they are being destroyed by an antibody. We have been trying high dose steroids for several weeks but there has been no improvement (besides the 4 pounds he gained in the last month - all of which can be found in his cheeks). Along with the steroids we are also trying a new med that suppresses his B cells (part of the immune system), as a way of stopping them from destroying his platelets. This new medication could take weeks/months to work and until this is all figured out and his counts become and then remain stable we will be staying in Calgary. I am trying to adjust to this new reality, more time away from home and away from real life. My main concern though is why this is happening with Kiah and getting all of it sorted out.
You wouldn't know any of this to look at him, he's still busy running around, energetic, and being silly. Daily hospital visits have been long and yet he still manages to make the most of it. Insisting on helping the nurses with absolutely everything and convincing them to watch Sesame Street or Doodlebop videos on YouTube while we wait. He knows all of the very detailed steps of our day and is quick to remind me should he feel the need to. He is a creature of habit and loves routine just like his Momma. Just hoping for a new one back home in the not too distant future.
serious about the details...
serious about the details...
