I thought of starting a thread, but honestly, I don't have the time or energy. Dad was taken by ambulance to the ER last Tuesday evening. I had him in his chair and planned to take him in the van, but he didn't feel like he could breathe well enough sitting up. Thankfully the ambulance was willing to take him to the UofM, which is about 45 minutes away. We got home from the hospital on Saturday.
He wasn't tolerating tube feeding very well. We'd tried three formulas. He always felt full. His stomach was full of gas. When his stomach feels full and uncomfortable, it makes it hard for him to breathe. (We are removing gas through the tube.) He had periods when he would get flushed and warm and have chills.
So they changed him to a fourth, no fiber formula. We did have a pump at home. At the hospital they have both the food and the water going into the pump and the pump automatically does the free water flushes. We asked for and came home with that set up. He seems to tolerate it better, though we did have to stop his feeding this evening again because he didn't feel well. We also got a med that we can give him whenever he feels nauseous.
He'd had a swallow study the week before he was in the hospital where they determined it wasn't safe for him to swallow anything. I think that has caused problems with secretions to increase. (Previously, he was washing them down. Now they have nowhere to go.). So we got a patch to help with secretions. We had a cough assist before we went to the hospital, but we also came home with suction. (By the way, there's an air hole on the suction wand that you need to put your thumb over to make it work. Maybe you won't have to bother the equipment people on Sunday like we did.
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In addition, they determined that the breathing issues were due to progression of ALS, which was not surprising, and we were glad that he didn't have pneumonia from aspiration. His O2 stats are pretty good without a bipap during the day, but he sets off warnings when he sleeps without a bipap. He's trying to wear it all night now.
Overall the care that Dad received was excellent. Seriously, I don't think I've ever had staff seek as much input from the family and listen as much as they did during this hospital stay. Some of the nursing staff are just rock stars.
We had brought up some of these medication issues with both neurologists and his primary physician and got no action. Finally neurology recommended we talk to the "palliative care team." They got the prescriptions going for nausea, the patch for secretions, air hunger. However, I do find it frustrating that there's now a third set of doctors we need to be following up with. Palliative asks that we do an office visit for him to be set up with them after leaving the hospital. It's not like he has any energy to spare.
So, I thought today we'd be back in the swing of things, I could catch up on work from last week. A regular caregiver was scheduled to give Dad his bath Monday morning. When I got in touch this afternoon, I find out the agency had to reassess after a hospital visit, so she wasn't able to come this morning. So I'm still very behind on work, but Dad did get a bath this evening. I could use about a week of sleep.
