The Long and Winding Road

Mom continues to make steady progress although she did have an episode where her oxygen levels plummeted and she had to go back on BiPAP for a while. They are no longer talking about a feeding tube, for now, and she is enjoying some real food again. This afternoon she had pureed macaroni and cheese and a thickened orange drink that was fortified with protein powder and nutrients, which she said was very good. We can see her getting stronger now that she is eating food again. However, whenever the topic of her recovery comes up her forehead crinkles up and she gets an overwhelmed look on her face. She knows how long it is going to take and is very frustrated by how hard everything is for her. The most important of those things being her breathing. The consensus among my siblings and me, for the moment, is that we will fight for her recovery as long as she wants to. It just feels like we are walking down this road that runs along a cliff and that at any moment the life that we all know will just fall away from us into some abyss.

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.

All Systems Were a Go Today!

Mom’s extubation was a complete success today. She was communicating with head nods and shakes beforehand and letting us know that she was ready to have that tube out of her throat. Afterward, she was placed back on BiPap, which is a less invasive form of intubation, and was holding her own on that. So, we are all hoping she will have a quiet uneventful night tonight and tomorrow they will assess her ability to swallow and hopefully she will be able to eat something. Yep, you read that correctly, she wasn’t allowed to have any food at all today and believe me she was hungry. Keep the prayers and good thoughts coming and I’ll continue to keep you all posted.