Alexx posting for Andi.
Tuesday May 17th Day +40
Another rough night. I slept through most of it but Alexx told me it was very busy. I spiked another high grade fever of 103.5 around midnight and had chills. I also started to require more oxygen–at first I was on a NC at 5L, then a concentrated face mask, and then something called a Non-Rebreather (NRB) to maximize and concentrate the amount of oxygen I was getting. Thankfully the NRB worked well.
The hypoxia (low oxygen) could be from the pneumonia but was also likely largely attributed to all of the fluids I needed to support my blood pressure and high fevers. It’s a very delicate balance. Since my blood pressure was okay they gave me 20mg of IV lasix (diuretic) and I peed almost 3L. This morning my oxygenation was improving so I am back on the normal face mask. They will continue to consult with pulmonology about my lung function and the CT results.
Because of the fevers and my overall condition they want to err on the side of caution and treat my infection aggressively until they narrow down the exact source. So I am on a very strong cocktails of antibiotics: Linezolid, Meropenem, Gentamycin, and Flagyl. This will treat a wide range of possible resistant infections, and then can be narrowed/stopped when the blood cultures come back and we have more data.
Wednesday May 18th Day +41
What a difference 24 hours can make. I am feeling much better. It seems the lasix and antibiotics have started to work. My breathing is improved and I am doing well on 3L on the nasal cannula. My coughing is decreased and I can talk more easily. Today Occupational Therapy came by and got me into the chair. Everyone keeps telling me how much better I look.
Because of the elevated EBV titers I got a second dose of Rituxan last night. Thankfully this time I didn’t react. They gave me very good premedications. Also, I finally slept through the night. It’s amazing what a good nights sleep can do. Alexx slept over again, that always helps.
Cognitively I feel a little bit fuzzy. It takes me longer to do things than usual and sometimes my memory is off. The doctors say this is normal in patients that have been critically ill. Add to that all of the medications and the fact that I have been hospitalized for almost 7 weeks. Given the medical setbacks over the past 3 days I have gotten very weak again. But today I sat in the chair, and tomorrow I will try to walk again with the fabulous Fabiola. I am a warrior!!!!!
I am just looking forward to having all of my medical issues resolved so that I can start the physical rehabilition aspect of my recovery. My biggest prayer is to walk into my house (even if it’s with a walker), to sleep in my own bed, and to sit in the lazy boy chair in my living room reading the newspaper and drinking an iced coffee. Alexx told me to meditate on this. To envision it. To take deep breaths and imagine it as if it is real. I can’t wait for that reality.