Sorry, a little late.
This is the email Sally sent me yesterday;
I found out today that Sam has "antitrypsin deficiency". Here is a link:
https://health.google.com/health/ref/Alpha-1+antitrypsin+deficiency It is a genetic disorder...and it explains a lot, it seems to be a "European descent" problem. Unfortunately this isn't the news I was hoping for. According to the Dr, she is going to have to live with this chronic disorder her whole life. I was really hoping her quality of life would improve after this. Finally, "the answer", no more searching. Still though, I felt like I got socked in the stomach.
I also learned that the fluid around her heart won't go away on its own so they are probably going to have to drain it tomorrow. They are going to do another sonogram in the morning just to be sure. This is a risky procedure because they are going to be going through her lung infection to get to her heart. It is an easy procedure, just very risky for her...they do it right there in her room.
On top of having pneumonia, she also had a cold.
Although her vitals are better today the other news mentioned above really got to me. It didn't help that she was restless all day. She acted like she had something very important to tell me and she kept clawing at her throat etc. I asked her a million "yes or no" questions to find out what she wanted and I got nowhere. We were both very frustrated. Her nurse finally tied her hands down. After 7 hours of that I had to come home...I am emotionally drained. I ran from side to side of her swinging robotic bed to help the nurse keep her hands away from her ventilator tube and to talk to her. I feel so helpless. Her medication wasn't doing much good today...they say that happens, it is just the way her body decides to metabolize the meds. It can change on any given day. Hopefully she will sleep well tonight, she needs to be fully rested for tomorrow's predicted procedure.
My neighbor brought over a nice hot plate of dinner. Thin cut marinated, grilled to perfection flank steak, steamed veggies and a baked potato from her garden. It was the best meal I've had in a week. I ate it like a field hand and washed it down with a much needed ice cold beer.
Keep her in your thoughts tomorrow.
Love, Sally
