Friday, May 5, 2017

Still No Luck

My mast cells truly have a mind of their own. As I discussed in yesterday's blog post, today was attempt #3 to switch me from oral to IV steroids. After last night went pretty smoothly, I was more confident that the steroid switch would be successful. However, by about 1 PM, I required another dose of injectable and inhaled Epinephrine, so we resumed IV steroids. Of course, I am disappointed, frustrated, and amazed at how stubborn my immune system is being. This is truly a testament to the strength of the immune system, and the fact that my body needs a LOT of time to make any adjustments.

This afternoon, I was fortunate enough to have a friend come visit me to play a few rounds of Finding Dory UNO, as well as visits from my dad, step mom and mom. I worked on two assignments for my online course today, did a sheet from a coloring book, and finished a page in my "painting by sticker" book. I am incredibly appreciative for everyone's love and support through this hospitalization. This is my longest hospitalization yet, and I am still at least 48 hours from potential discharge. I am still really hoping that I will get discharged in time for my little brother's birthday. This has been a very physically and emotionally exhausting week, and my body doesn't seem to really want to give me a break. I had the IV steroids this morning, but I am still having widespread flushing, discomfort, and got another round of breathing treatments. Nevertheless, the only thing that we can do is continue to try again, and eventually, have a successful outcome. My understanding is that we will try again tomorrow, crossing fingers and toes. Hopefully the increased Gleevec will start to kick in and make a difference too.

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