A Chipmunk with Bad Botox

Good evening everyone! So, I got to move rooms, but STILL only within the ICU. This morning, they switched my steroids from IV to oral to prepare me to go home. Unfortunately, my body is not enthralled with the reduced steroid dosage, and instead wants to take its sweet time. I still have been Epi free, but the swelling is in my face, neck, lips and eyes, and they consider my neck swelling to be airway involvement. I look like a chipmunk who had bad botox. We are trying to see if we can increase the dose of my oral chemotherapy, Gleevec, to stay ahead of the curve.

They keep bouncing me around within the ICU as other patients come and get discharged. The step down unit is still full, so even though there are orders in place for me to be moved, there is nowhere for me to go. Because of my immunodeficiency, I have to have a private room, which complicates things. I want to shower SO bad, but I again know that I have to be patient to ensure that my momentum stays in the positive direction. At least this new room I got (5th room in the ICU) is a negative pressure/isolation room, so it is HUGE. 

In addition to a lack of shower, the ICU also comes with a lack of privacy and sleep. My mom has been able to come by after work every day to keep me company. Although it is a major bummer to be in here, and I have been pretty lonely, the nursing staff has been absolutely incredible. Every nurse I have had has been amazing and incredibly compassionate and caring. I am extraordinarily thankful for them, as well as the doctor who has been overseeing my case. 

So, the plan from here is to try to keep reducing the steroids as much as possible while making sure things stay safe. Lots of IV Benadryl and Pepcid to keep me comfortable through the process. I miss my bed, privacy and shower, so I really really hope they can get me out of here ASAP. In the mean time, I continue to count my blessings and maintain positivity despite the crummy circumstances. I requested a service dog visit and art cart visit for tomorrow, so hopefully that will help change the pace up as well.

Thanks again for all the love and support, and I will continue to try to keep you all updated!