Pals in the hospital- looking for guidance

[smg0012]

I just took my PALS to the hospital and hour ago. He has been fighting what seams to be a chest cold for about a month now. The doctors aren't saying much yet and he hasn't been to a neurologist in over 6 years (when he was 1st diagnosed). I was hoping some of you can give me guidance or hope that this isn't the end. How do you know when the end is near? I'm praying it's just the winter weather playing havoc on his body. Thank you all.

 

[Nikki J]

So very sorry. It is impossible for us to say. Questions you might ask. what did the chest xray show? If there were blood gasses taken ( an arterial blood sample) what did it show? How was the oxygen and the CO2? CO2 is often an issue at the end as it accumulates. Do not let them use cpap if they want to. It needs to be bipap ( non invasive ventilation assistance)
As you learn more feel free to post so people can try to help. Have you discussed with your PALS wishes about a trach and vent? I have no idea whether it might be an issue now but sometimes it comes up as an emergency decision
We will all be thinking of you

 

[smg0012]

He does have a bipap and hasn't used it for the past 3 hours or so. And doesn't need it 24/7. He uses it to sleep and when he feels a little week. Right now his puls ox was 93/94 before they gave him some oxygen. Now it's95. They just did his x-rays so they haven't come back yet and the blood work is still running. Before they even got any labs back, they brought in iv antibiotics. But other than that, that's all I know. The trach/vent is 1/2 the reason we've avoided docs. The neurologist by us have the worst bedside manner and 2 years ago said he would be dead in a month to his face and pretty much just walk out of the room. Hes afraid a doc will force him before he's ready. He doesn't want one at all. Thank you for your response.

 

[Atsugi]

The patient is always in charge of his healthcare. He may refuse any care whatsoever. That's the law.

 

[smg0012]

That's what I tell him. He doesn't understand that and would rather avoid the doc and not get treated for colds (etc) l. He Also has ftd so that tends to complicate things at times.

 

[lgelb]

SMG, giving him oxygen he doesn't need (a pulse ox of 93-94 isn't) could make things worse...do his docs, esp. the lead, know ALS? Don't be afraid to ask for someone who does. Don't be passive.

I know you're scared, but from what you've said, things could be very far from the end. We just need more info to be more definitive about saying anything about that, and you deserve more info than what you have. Make it clear that you want to know all the evidence at hand and that he wants only the treatment that is relevant to his current complication.

Be clear about his choices. Make sure while he can talk or nod or whatever that someone charts his agreement that you will speak for him, if you do not have paperwork to that effect.

You can walk out any time, he can refuse any medication or intervention any time. If they started abx before the film was read (which takes a couple of seconds), ask what the reasoning is and what he is getting. What did they hear when they listened to his lungs & heart?

If he doesn't want a trach or vent, and I haven't heard any reason why he would need one anyway, he absolutely does not even have to discuss that. It is just their obligation to make recommendations and to state consequences for anything that you put off/decide against/wait to see results.

If he's been coughing (fever?) for a month, and his need for the BiPAP has not increased dramatically during that time, he likely has bronchitis or pneumonia. If he's been eating, drinking, or using his feeding tube regularly, he could be well-equipped to fight it off, with a little help.

Stay with him -- stay alert. Pretend that every time someone wants to do something or administer something that they came up to you in the street -- be that skeptical. I will PM you my contact info in case you need anything off line.

--Laurie

 

[Atsugi]

Laurie said "Stay with him -- stay alert. Pretend that every time someone wants to do something or administer something that they came up to you in the street -- be that skeptical"

I totally agree, SMG. I DO mean to alarm you now. Most doctors and nearly all nurses have no idea how to care for a person with ALS. They always pretend to know, but they don't. You'll need to stay by your PALS side to ensure he is not falling out of a gurney or bed, or that somebody doesn't accidentally cut off his airway.

 

[smg0012]

Laurie, you were right! It's bilateral pneumonia. They are admitting him to the hospital now for at least one night of ivs and observations. Thank you. And everything else you said is so true. That you for the insight and the knowledge to know when/how to speak up. Hopefully this is just another speed bump on the als journey but not the end.

 

[smg0012]

I totally agree, SMG. I DO mean to alarm you now. Most doctors and nearly all nurses have no idea how to care for a person with ALS. They always pretend to know, but they don't. You'll need to stay by your PALS side to ensure he is not falling out of a gurney or bed, or that somebody doesn't accidentally cut off his airway.[/QUOTE]

So true. We've noticed that with transfers all the time. He no longer has use of limbs and has trouble talking. I happen to be 1/2 deaf so I'm usually one of the few people to understand him so because of this I am going to stay by his side as much as possible. I think so often medical professionals 'know what we are going through' and think that they know the 'best' way to do things, or they get caught up in some things and forget that als patients take extra care, time, & PATIENCE!

 

[lgelb]

How is he doing?

Hope he gets some rest, preferably on PAP. I'm afraid yours will likely await your return home. If he has to stay more than one night, try to corral a worthy stand-in so you can rest.

Also, I'm sure you figured this out, but lab techs, esp. in the middle of the night, have a tendency to ignore or not know about quadriplegia. They don't look at charts, just lab orders. They'll grab joints and possibly dislocate them. Don't let them touch him until you've positioned and supported the arm, and explained the situation.

Stay strong!
--Laurie

 

[smg0012]

Thank you laurie! He's doing better. Now he's just really tired. It's been a long emotional day, not to mention he hasn't been eating well so he's low on energy. He's sleeping now. So soon I will be too. we will see what the doc says in the morning. I've talked with the RN extensively on how to work with/move him so hopefully he will be OK for 4 hours until someone else can be with him. Right now he's on his home bipap but they will be switching him to theirs soon. I will keep you all posted. Any insight and words of encouragement are always welcome.

-stephanie

 

[shepherdnurse]

I hope all continued to go well! Are there other options in the area for doctors if you're not satisfied with the one you have? You mentioned that your PALS doesn't like the neurologist. Maybe there are some contacts through the forum that know of better doctors in your area?

 

[smg0012]

I would love any suggestions on doctors! we live in the atlanta area. where would i look for that information on the forum? But he did get released today. he responded well enough on antibiotics that they released him today. They said they've done all they can do for him, however he hasn't improved much since admitting him. my fear is that he wasn't just sick, but the ALS progressed as well.

 

[gooseberry]

The clinic at emory seems to get good reviews. We have not attended it personally.

 

[smg0012]

The clinic at emory seems to get good reviews. We have not attended it personally.

that is actually where he was diagnosed. after the doctor there told him he had ALS he was upset (obviously) and the doctor started to get irritated towards him and said "do you think i like telling people they are going to die. My job is really hard". he showed more compassion towards himself having to give bad new than towards the patient getting it.