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Distinguished member
Dec 21, 2017
Loved one DX
I apologize for the length of this post but I hope it might help others who have to take their PALS to the ER.

We were in the hospital from Thursday morning until noon on Saturday. As I have posted previously the trip to the ER was recommended by our health care nurse based on a false oxygen level readings of 87/88. We had fewer problems during this hospital stay mainly due to our past experience (5 stays within the last year) and preparation.

The following tips may have been posted numerous times on this forum but I think they are worth repeating:

Take your breathing apparatus. Most important!

Keep a container with all the necessary paperwork. I use an older PC carrier. It contains all my wife's ID stuff: driver's license, insurance cards. living will, my power of attorney, a daily schedule of medications, a list of allergies, and some history of her recent problems.

Keep a go bag already packed with stuff you might need. I used a regular travel bag with smaller bags inside (see through bags - the ones with zippers that new linens come in). I put a note in each bag with a list of contents - diapers, wipes, underpads, ointment, toothettes, medication, syringe, plunger, etc. I also put in some Boost and other goodies for myself including shaving kit, etc. extra undies and shirt.

If your PALS is using the feeding tube you should take every thing you need to do the feeding yourself. This was most important to us since they did not have feeding tube stuff readily available.

Don't assume that the doctor's and nurses are ALS aware and make sure they know of any special considerations about your PALS care. "Don't pull on her shoulders or hip, etc."

Ask what medications are being given before letting them be administered. Don't be shy to say no. Most nurses appreciate this. Just remember that you are the caregiver and know more about your PALS than others. Their medication list may contain old medications that are no longer applicable. This happened with us.

Be aware that some hospital staff are on automatic pilot and do the same things whether good for the patient or not. One nurse told us that the bed must always remain at its lowest profile unless diaper changing etc. At 6' 3" this is not good for me. And she always engaged the warning feature which turned on the flashing lights at the foot of the bed. This makes sleeping very difficult.

If appropriate, ask them to skip taking midnight vitals. We did this and we're very glad we did.

One last comment. For some reason my wife started sleeping almost a full night while at the hospital. She has done so again last night at home. This is a God send. I actually slep 5 hrs. without interruption.
Good stuff worth a repeat
More useless stuff.

Hospital doctor concerned about fluid build-up in lungs and legs so she prescribed Furosemide to check the fluid retention. As a result my wife started asking for toothettes and water because she was experiencing dry mouth. This may be the reason she is sleeping better. Prior to hospital visit and this new medicine she was constantly using tissues to dry the excess salvia. She is not doing that now but complaining of dry mouth. I cut the Furosemide dosage in half and it seems to have solved the problem. No more dry mouth and no more excess salvia.

Ernie, while your wife's ALS sadly progresses, you've progressed to an amazing and savy CALS. Keep up the good work! Hope the saliva issue stays solved and you both get good sleep to recuperate from the hospital.
Thanks Wish;

Being retired helps but I fear for her comfort more than anything else and this is the motivator.

I stopped the new medicine. Although my wife's excess secretions stopped she was sleeping a lot and was much less responsive. A nurse friend said that the new medicine was not recommended for patients with heart issues. It helps keep fluid buildup. Can't spell the word (di ur ret ic?). Wife has left branch bundle block and her ejection fraction is at 30%.

I'll call the doctor today and maybe get to talk to a human being.
Ernie, yes, definitely talk to her doctor about your concerns.

With the low ejection fraction and difficulty breathing, it sounds like she has congestive heart failure (CHF). This is a situation where the heart isn’t able to pump efficiently enough keep up with the demands of the body. The result is that blood pools up in the heart and in the veins. This can lead to fluid seeping from the circulation into the tissues (edema) or fluid seeping into the lung tissues (pulmonary edema). The latter interferes with breathing.

Diuretics, like Lasix (Furosemide) are given to help remove excess fluid from the body so it is less likely to build up in the lungs and other tissues. The downside is that it is hard to keep the fluid balance and electrolytes optimally controlled.

There are other options for treating CHF, so do discuss with her doctor.

I’m sorry you’re having to deal with this on top of ALS. It sounds like you are doing an amazing job.

The ejection fraction is correct but her breathing has never been labored. She is resting very comfortably now. The breathing issue was a false alarm. The home care nurse's readings for oxygen content was 87/88. The EMT in the ambulance took readings of 96/97. He explained that cold hands, nail polish, etc. may have interferred. I also understand that for ALS patients it is more about C02 retention.

Could not reach emergency room doctor so have called her PCP.

I halved the 20 ml prescription but she still remained lethargic. Thinking of taking it down to 5 ml.

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