Monday, April 10, 2017

Making Progress

Good evening everyone! I am happy to report that I finally feel like we are making some forward momentum on getting me out of this flare. Although I am technically still in the ICU, my status has been downgraded to the step down floor. They were supposed to move me, but the unit that is a care level below the ICU is full, so I am stuck here. Even though I am still here, the doctor told me that this does not necessarily prolong my stay, as long as I remain stable.

I  still have been epinephrine free for more than 24 hours. The next step is to switch my steroids from IV dosage to oral, and make sure that the swelling goes away. I am still in a reactive state, which they want to see go away.  I had a reaction to salt water yesterday-- I wish I was kidding. Luckily it was mild and responded to Benadryl, but it demonstrated that I am still hypersensitive. We suspect I reacted to a preservative in the prefilled syringes. I am on high doses of IV Benadryl and Pepcid around the clock, and still experiencing flushing and burning, which also is something they would like to see improved before discharge.
New note on my whiteboard thanks to preservative filled saline.

The doctor told me that my discharge depends on how I respond to the reduction in steroid dose.She also spoke with my mast cell specialist, and they want to get me out of this flare before putting me back out into the world of spring allergies. I am NOT happy that I have to restart the steroid taper, but I know that it is an important medication to include in my treatment protocol. There were some concerns yesterday about my lungs "falling asleep" from all of the inflammation, but that also appears to be improved today. I have been doing some lung exercises to work on making sure that I get oxygen to the entirety of my lungs, and I also have been trying to walk around as much as possible.

So, all in all, things are going in the right direction. I just have to continue to be patient and let my body heal. I am hoping to get out of here tomorrow, but it sounds like it depends on how the steroid dose change goes. At the very minimum I would be moved to a less "intense" floor. In the mean time, I finished my sticker book and tried to work on some assignments for my online classes, although I will probably have to revise them when I am out of a Benadryl fog.

I am VERY ready to get out of here, but I know that if I get discharged too early, I'm just going to end up back here. I am working on maintaining positivity and distracting myself to continue the forward momentum. I would love to be celebrating Passover and Spring Break with my family right now, but I am instead going on day 3 in the hospital. The chaplain's office brought me a little Passover kit, but of course, it is not the same as getting to spend time with friends and family. Just like I talked about in my post yesterday, I have to remember to count my blessings, and take things one hour at a time. Until tomorrow!

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