What to avoid in the hospital?

[lisaann1170]

Dad had a feeding tube placed yesterday and is still in the hospital. I have some concerns about nurses, doctors, etc who are unfamiliar with ALS.

I've read that oxygen can be problematic and can create dependency. Is no level of oxygen acceptable?

What about morphine?

I've been quite vocal about my concerns with the medical staff, so I'm comfortable with events so far but I want to stay educated!

For the record, Dad's FVC 3 months ago was 100%. Today his test was inconclusive (too much coughing) but showed a "significant decrease." He's trying the bi-pap tonight.

 

[GlenBrittle]

Having had a PEG feeding tube inserted a month ago , there should be no need for pain medication other than Tylenol.

Oxygen ?, if he is trying Bipap tonight , it should be free air to start . If they give him a proper fitting mask , you should see a change tomorrow.

All of these comments and questions lead me to think that your Dad was not in good shape going in.

How is he doing now ?

Glen

 

[topsfan]

My mother (71 yrs old diagnosed 3/09 with bulbar) was admitted to the hospital a week ago. She was gasping for breath while wearing her bi-pap. The paramedics put her on oxygen. the respiratory personnel at the ER did also... we were concerned about the use of Oxygen, as she hadn't used it before and we've read of the dangers. Its a small town hospital and it was pretty obvious they did not know or understand what they were dealing with. Turns out she was aspirating (1st time) and had a heart attack while at the ER. They wanted to do a scan of her lungs to search for blood clots, but she cannot lay down without choking, so they chose to treat her like she had one and gave her Heprin. On Monday, they did and ultrasound of her legs and found a clot, by Tuesday it was no longer there - so they forced a scan of the lungs and found 2 there. They have had her on and off oxygen since last Sunday and she was doing pretty well and expected to be home tomorrow. Just yesterday (October 18th) she had another set back - they have increased her oxygen with the bi-pap and she is struggling worse then before. blood oxygen levels seem to be all over the place. We had been to ALS clinic the week before and her FVC was 30%. Mom does not want a feeding tube or vent and it was recommended we get hospice involved. We have enlisted hospice for her return home but not certain about how this hospital stay and the treatement she has received have affected her.

 

[lisaann1170]

topsfan,

I'm so sorry to hear that your mom has had to go through so much. I read some of your other posts on her progress. I hope she can find some comfort and relief!

Glen,

It wasn't a good situation. As I feared, we waited too long to have the PEG placed, although I have to admit that his disease has progressed faster than I had feared it would. I'm having a hard time keeping up, let alone getting ahead! 6 months ago he was walking, talking, and eating normally. Today, words like PEG, bipap, and Dynavox are part of our daily vocabulary.

Dad is home after 3 days in the hospital. He gets a bipap this week, although I fear with his bulbar symptoms, it will be a challenge to use. He also gets a cough assist this week and I'm afraid that will be a disappointment, too. He tried the bipap in the hospital and was uncomfortable with it. I expect the same will happen with the cough assist. It's all worth a shot, though!

I'm the sort of person who can find the good in the bad, but I'm struggling a bit lately. He's so unhappy and it pains me.

Anyway...I'll keep searching for the silver lining.

 

[GlenBrittle]

Lisa,

The BiPap can take some getting used to , tell him to keep at it. It is essential to get a good fitting mask that doesn't leek air. That can be a major irritant at the beginning.

I am hoping for better days for you and your Dad.

Glen

 

[Blackpool]

Lisaann,Even if your Dad only uses the Bipap a couple of hours a day while watching TV, it will help and makes it easier to get used to ,it might take awhile but tell him not to give up, it will get better.