The Long Road Ahead

I saw my mom today and she was off the BiPAP and had a high flow cannula in her nose that was helping her breathe. One of the first things she asked me today was if she had missed the wedding. At first, I wasn’t sure what she was talking about but then I realized she meant Prince Harry’s wedding. I told her that she hadn’t missed it and she asked me to record it for her. I had to laugh to myself, here she is fighting to breathe and yet she is worried about missing the big event. But, that’s my mom. She is still only allowed to eat pudding, ice chips, and applesauce because her swallowing muscles are still too weak and they are very concerned about her aspirating food into her lungs and getting pneumonia again. They are talking about putting in a naso gastric tube to get nutrition into her. But the trouble is they can’t do that until she is off BiPAP because the tube won’t work with the mask. So, we can either help her breathe or feed her. It’s an obvious choice but a very difficult one as well. The current plan is to wait and see how she does tonight and hopefully they will be able to wean her off the BiPAP sometime this week. For now, her care team is sounding more hopeful that she is going to pull through. They are making it very clear though that if she does, it will be a very long road.

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