Bipap in the hospital

[Tomswife]

PALS Tom is in the hospital with pneumonia. This is not unexpected and occurs sometimes in late stage bulbar ALS.
What is interesting is the hospital wants him on his home bipap, with home settings..So our daughter went home and got it.

I question everything, always learning. The pulmonologist and I had several discussions about the effect of the bipap on pneumonia. Short answer, yes bipap is good and fine with pneumonia. Or at least this pneumonia.

So...as CALS I sleep on a couch in his room. I run the Bipap. The staff gives me sterile water. When Tom is not on the Bipap,he is on low dose "nose" oxygen. I haven't left the hospital.

 

[MJT]

I'm sorry you and Tom are there. I hope he completely recovers quickly. Sending love.

 

[lisa g]

I was in the hospital in January. We told the nurses that I used a trilogy at night. They said that they didn't have a trilogy but would provide their equipment. They brought the machine in, I told them what the settings on my machine were. They couldn't get the settings on their machine to where I was comfortable so my husband went home and brought back my machine. It worked out fine.

 

[Tomswife]

So...the nurse trained me on the suction device here so I can do it on demand.

 

[lgelb]

Typically home equipment is preferred for continuing BiPAP. We did the same. Hospital RTs and equipment are geared toward the full-takeover, high-pressure vent setups you see in ICU for someone who has complete machine assistance, which is usually unwise for PALS.

How is Tom today?

 

[Bestfriends14]

Wayne is on his machine at the hospital. We're going into two months on and off (more on) at the hospital, and I'm burned out. My visits are now only 2-4 hours a day, whereas they were up to 12 before. The hour and a half drive round trip on top of the visit, too, wears me out.

 

[Tomswife]

Tom is weak but okay. I know he wants to go home. But I dont want the stress of going home for a short stint and then calling 911 again. He has not had a bm in 4 days, and they have him on something. Dont know what today's xray showed.
I have been living here in his room, since Saturday am. Bought myself a clean shirt from gift shop. Since i run the bipap and they trained me on the suction, I don't think I can or should go home. Tom cant buzz for help.
The nurses spend a lot of time looking at computers. I think very highly of nurses. However. This care is very uneven. I have to ask for most things.

 

[Tomswife]

Bestfriends. So sorry.

 

[Tomswife]

Bestfriends. I can't imagine the revisits to the hospital. Calling 911 is so stressful for Tom. I hate doing it. I call the on call doctor at our provider and they tell me to call 911.

 

[Bestfriends14]

@Tomswife, that is my least favorite and most stressful part. Do I call 911? Do I not call? Will this breathing incident pass? I hope Tom gets past his pneumonia quickly, and there will be no more issues for a whole. This disease is so very stressful.

 

[Bestfriends14]

@Tomswife How is Tom doing? While I was at the hospital last night, I was thinking of how you are both doing.

 

[Tomswife]

Bestfriends. Thank you. I was thinking of you and your journey with Wayne. The hospital is only 10 minutes from our home. You have such a distance. You are in my prayers.
They are talking about discharge, but I am really nervous. I think he is too weak for BM adventures in the hoyer lift. Here at hospital he goes on Medline absorbent sheet and it takes 2 people to clean him up. His Bm has blood in it. They would send us home with oxygen, suction device, cough assist, etc. I am scared and overwhelmed.
I cannot do this at home, in his current condition. He is Extremely weak.

 

[Bestfriends14]

Oh jeez, that sounds scary and stressful. Are they going to provide a homecare nurse for the first little bit? Wayne can only move his head and shoulders, but he can still sit in a commode chair for his BMs. Do you have a chair that Tom can sit in?

 

[Tomswife]

We will be discharged probably friday. They will order visiting nurses. I increased his paid aides to pt 7 days. I looked into nursing homes but tom wants to go home. So that's what we will do. We have been using hoyer to bedpan on the bed, but i think he is too weak. So i may do what they do in hospital....medline absorbent pads and then clean up the mess. I don't think he can tolerate sling anymore.
Meanwhile...i am frazzled.

 

[Bestfriends14]

@Tomswife I sent you a PM