LTC Recommendations/Thoughts/Alternatives

[kljack16]

Timothy is in the hospital for the third time since November, second time since mid January.

He has phlegm build up that stays for the most part in his throat. The cough assist doesn’t work for him. The percussion vest helps some, but not enough. He’s on multiple nebulizers. We suction, we keep his head up, he wears his BiPAP all night and quite a bit during the day, but he still ends up with respiration pneumonia.

The doctor at the hospital (Starkville, MS) just told us he thinks Timothy needs to be moved to an LTAC (long term acute care) facility.

I would rather keep him at home, but I know we have limitations in what I can do, in our equipment, etc …. Since we live in a small town, I can’t imagine a facility here that would be able to handle an ALS patient. We bought a place in Houston after he was initially diagnosed thinking we would need to move to a larger city with better medical care, but we changed our minds since he loved it here so much (in the dream house we built for our retirement).

I’ve seen some things on this forum about LTACs, but they all seem to be really old; so I wanted to see if there were thoughts/suggestions/options that we should consider. I am not opposed to finding someone to come in permanently to assist, but we’ve had a lot of trouble finding someone here who is capable of his very specific needs.

I have a call into our Houston Pulmonologist and the Houston ALS Clinic trying to understand if there are other options (maybe a trach), but desperate for information and advice if y’all have any you would be willing to share.

Timothy is still has minimal upper body movement. His legs are still unbelievably strong, but they don’t work - he can’t walk, stand or even pivot anymore. All moves are via Hoyer. He’s in his PWC almost 24/7 because of the need to keep his head up, but allow him to lean forward to expel saliva and phlegm.

As always, thank you in advance for your counsel and wisdom.

Kelli

 

[Tomswife]

Hugs and prayers for you and Timothy.

 

[lgelb]

Very sorry to hear about Timothy's progression, Kelli. I am not clear on what everyday equipment they would have at the LTAC that you don't, besides more heavy-duty suction and readier access to injectable/IV drugs. And many facilities are short-staffed so quality of care would be a concern. Quite honestly, without a decent staff ratio, things could get worse than they are. I'm not saying there are no options in that category...but the closest LTACH I see to Starksville on Medicare's list is 75 mi away?

Does he have a feeding tube? Have you tried pineapple/papaya juice in it? Have you experimented with his hydration? How does he communicate?

Does his PWC have anterior tilt?

Do you have room/financial wherewithal for live-in help? There are a lot of nurses burning out in hospitals as well as travel nurses who are looking for new situations and you could potentially recruit from Houston as well as other cities.

Trachs still need to be suctioned...we have had people on trachs who could not handle the secretions. When secretions are not building up or he is as clear of phlegm as he gets, how is his breathing? Is someone looking at the machine data? Sometimes gunk builds up because the BiPAP settings are suboptimal.

This may sound basic, but are you keeping hoses, filters clean; replacing machine filters more often; likewise any furnace filters; adjusting humidification in the room? What BiPAP do you have and what humidifier does it use?

That's a lot of questions...I would just like to be able to generate the best possible thoughts for you.

--Laurie

 

[kljack16]

Hi Laurie - thank you for the thorough response. I’m sorry I’m so delayed in responding to you. Before we could get into the LTAC (due to no beds), he passed away, February 10.

He was still trying to decide on a trach, and leaning heavily against it. After a week in the ICU, I strongly believe they effectively killed him (or at least significantly accelerated his death). I stupidly didn’t know all the overload of CO2 signs, but I think there were a lot there.

They insisted on putting him on their BiPAP even though we pushed back hard. They said it was the only way they could adequately control his O2. I reminded them over and over and over that the bigger concern with ALS was the build up of CO2, but they said their BiPAP accounted for that.

By the time they said we had to decide about intubation, since that was their only option left to keep his oxygen levels from following, they had given him so much morphine for pain, he couldn’t tell me what he wanted. The day before, he told the LTAC Rep that he did NOT want a trach, and since it was clear if they intubated him, he would have to be trached, I said to just make him comfortable and I wanted to take him home, if that was at all possible (they made it seem like we had days). They moved him back to our BiPAP, and within a minute, he was gone. I believe he was already gone and would not have survived the intubation. So, my only solace at this point is knowing I was with him. It doesn’t help much, but it’s all I have.

Please make sure your members know the signs of too much CO2, and as much as you think you can rely on the education of the nurses, doctors and respiratory therapists, sometimes they are so busy focusing on one thing they lose track of what could actually kill an ALS patient.

Thank you for this forum and all the help and support you’ve given us over the past two and a half years. It’s been invaluable. I pray they find answers soon so someday, no one will ever have to go through this wretched, hateful disease.

 

[Nikki J]

Please express your condolences here Timothy