Much of the Same

Happy Sunday everybody! I hope you all had a relaxing day with your families. At least up here in the Bay Area, the weather looked really pretty from indoors :) I got to sit in the window sill for a few minutes today and get some natural Vitamin D.

Unfortunately my transfer out of the ICU was postponed again. I didn't have any major episodes, but I am still having some respiratory issues when I am walking, and my facial swelling hasn't let up much. I have not needed any epinephrine, which is REALLY good news. When I did have a little bit of trouble breathing, I responded to the meds right away,  which is all steps in the right direction.

Even though I am having facial swelling, we are working on reducing my steroid dosage to prevent any additional long term damage from side effects. Because I am still having some swelling, and because of the reduction of the steroids, they are keeping me in the ICU for one more night. Facial swelling itself is not necessarily dangerous, but because respiratory stuff involves my airway, they have to be cautious. Tomorrow I should be able to move to the step down unit, fingers crossed. Once I am there, they will probably keep me for another day or two to make sure that they can safely reduce my steroid dose without any further issues. The doctors want to see me out of this flare before I go anywhere, because this flare up has been so stubborn. I am working with my medical team to ensure that I don't get any fun hospital side effects while I am here, like wearing stockings on my legs that ensure blood flow, and using a breathing device to make sure I have good air flow in my lungs to prevent pneumonia.

I am working hard to maintain the positivity, and I can't thank you all enough for all of your kindness and support. It is frustrating to still be stuck here at all, let along in the ICU, but I am still counting my blessings. The hospital is a difficult place to be in, everybody around here is in crisis mode, and it is difficult to see patients and families suffering. Although my situation is not the greatest, I have to be thankful that I am conscious, not intubated, and moving in the right direction. I just have to try to be patient and let my body catch up. The ICU is almost empty, only 6 other patients.

For those of you who have followed my previous blog posts, I am still keeping track of my Beads of Courage. Every time I have a set back here, documenting it on my bead journal has been helpful in remaining optimistic, and I guess being as courageous as possible. Once a month I tell the Beads of Courage organization which beads to mail me. I have attached a photo of my bead journal from the last couple of days. I suppose it helps me not be discouraged by how slow the healing process is.

Bead Journal

I will post another update tomorrow.