It's not looking good - anyone with input

[kedevlin23]

Dad was Dx'd with PLS Sept '09.

He is sick - he was admitted to the hospital on Friday AM. He was in really rough shape after days of not sleeping and throwing up he was dehydrated, etc.

They got him on IV fluids and got the anti-nausea meds pumped in and he was doing a bit better - but was still not sleeping because he wouldn't keep his b-pap on. He kept pulling it off and saying he couldn't breathe. Saturday he seemed ok - he was joking and was more cognicent and the delirium had subsided.

Mom stayed with him last night and he was not sleeping again and was throwing up again and he's in a ton of pain in his legs, etc. He's got high CO2 and he won't keep on the b-pap. Today he's slipped back into delerium to some degree.

Now their talking about getting him on a respirator. My aunt who has worked in ICU for 20+ years in the same hospital where my dad is has made some observations that she believes a few of his issues is that he is being overmedicated - I'm pushing my mom to get into contact with Dad's ALS MD on that point and get the 2 doctors talking.

I'm saddened by this whole situation - because I feel like a respirator is a very bad thing....or is it? Or is this just a change in the disease - I see in the forum that people have them and live a long time with them....is this just a complication that we need to address and get throuh? Or is this really just the end? As this is an emergency situation now.

Just like with the PEGs I'm reading with the respirators that the outcomes may not be favorable if it's not done until it's an emergency. Does anyone have any experience with this?

 

[Katie C]

Do you have any idea what your dad's views on respirators, etc, are? What kinds of medications ishe on? "Overmedicated" can be a matter of opinion.. is he receiving a lot of pain medication because he's in a lot of pain? There are those who may have thought we "overmedicated" my mom in the last weeks of her life.. and yes, she was receiving a LOT of pain medication. But the fact was she was dying of cancer, she was NOT going to get better, and we made a decision that her comfort was of utmost importance. I agree that talking to the ALS doctor is extremely important right now, and putting the two doctors in touch with each other. Hang in there!

 

[handinhand]

I am so sorry that you are going through this. I would get ahold of the ALS Drs right away just as Katie said... They need to know what is going on with your Dad and can maybe tell you if it is the meds or something else. Ask lots of questions when the Drs come in. Find out what meds they have him on and how much... I pray that this is just a bump in the road, that happens a lot. Thinking of you today, Hugs, Linda

 

[indigosd]

HE NEEDS TO BE ON HIS BIPAP! He is not able to blow off his CO2 and the O2 is making it worse. It is a ventilation issue with the increased CO2.

 

[Al]

Most ER docs have not seen an ALS patient before. Get his ALS doc involved asap.

AL.

 

[kedevlin23]

HE NEEDS TO BE ON HIS BIPAP! He is not able to blow off his CO2 and the O2 is making it worse. It is a ventilation issue with the increased CO2.

This is exactly the issue at this point. He's extremly agitated and in and out of delerium. He's not getting ANY sleep, but the problem is that he refuses to leave his bpap on. No sleep = not getting better. He keeps taking it off because he is feeling trapped - is there anyway to get over that?

He's still throwing up and they just can't seem to figure that piece out either. However, I'm pregnant and am still dealing with Morning sickness and if I don't get enough sleep I am very, very sick.....in general when you don't get enough sleep you don't feel well, so that might be the main factor with that is sleep.....

As far as drugs; I know that he's on something for the nausea, something to calm him as he's agitated and now antibiotics as he now has a UTI.

His pain is in his legs - they've not been able to do his stretching exercises since he's been in the hospital - I'm not sure if they are giving him anything for the pain in his legs. He typically takes a drug for spasticity, but I think that is what they thought was causing the nausea, so they have taken him off that. I do not know what he was rx'd.

I also know that he is taking Rilutek - but I believe they took him off that as well - for now.

All of the above is the reason I want them in touch with the ALS MD. General MDs don't have any clue as to what impacts other drugs may cause....that's my biggest worry.
So, everyone is on board to get in touch with the ALS MD - he doesn't work on Sunday's but I'm sure if he got a message that one of his patients is in the hospital having difficulty he would get in touch - but I'm 6.5 hours away and no one listens to me....as hard as I try to push.

We are all very clear on his wishes for interventions. However, he's willing to give into the trach with the ventilation - they have discussed that piece and I keep bringing it up with my Mom to make sure we're all clear and on the same page with that.

This is all just moving so quickly - He was just walking a year and a half ago....UGH! This disease is so frustrating!

Thank you everyone for your input. I appreciate it.

 

[indigosd]

Rilutek made my husband very nauseated, extreme abdominal pain, dizziness and hypersensitivity. He was only on it for three weeks. I hope that they can make your Dad comfortable and that they contact his ALS Dr. hugs

 

[hopeful warrior]

Agreed about contacting ALS Dr. Can physical therapy come and do range of motion exercises on his legs to see if that helps?

 

[kedevlin23]

All hands are on board for the discussion with the ALS MD. Interesting that they discovered that he was self-medicating and taking 4x the amount of Baclofen that he should have been. There is some dispute between Dad's story and what he should be taking, so hopefully the ALS MD can clear that up. Timing to me is not coincidental on when he started to feel ill and reading the overdose details of this med - they are pretty close to what his issues are:

"Baclofen overdose symptoms may include muscle weakness, vomiting, drowsiness, dilated or pinpoint pupils, weak or shallow breathing, fainting, or coma."

Last night he wrestled with my aunt who is an ICU nurse (what more suitable person for this job) and finally she got him some meds for anxiety and a muscle relaxant and got him to wear his b-pap and rubbed his legs for a few hours to help with the leg issues (she's also trained in massage). So, they settled on moving him every 30 minutes instead of the 2 minutes he was requesting and he's slept for about 7 hours last night.

I'm hoping the sleep last night and connecting the 2 MDs will be a good jump start and get him over this episode. Hopefully they can agree on a med cocktail and get him stabilized. However, it's day to day.....

 

[indigosd]

Wondering how all of you are today? hugs

 

[handinhand]

Hi, I sure hope things are a little etter today. Just a note to let you know I am thinking about you and your dad..L

 

[kedevlin23]

Thanks everyone for your input and thoughts - it's much appreciated.

I contacted my aunt who is an ICU nurse and she's the one that stayed with Dad last night so that Mom cold go home and get some sleep and keep her appointments this morning. What better a person to be up for that challenge. They wrestled for about 3 hours back and forth about how often she was going to move him and getting him to wear the b-pap, etc. Finally she was able to get orders for an anti-anxiety med and a muscle relaxant as he was still really agitated and he was freaking out about the mask for the b-pap, because of his throwing up he was stressing that he would aspirate. They're still giving him anti-nausea meds and he hasn't thrown up for about 12 hours.

He slept 7 hours last night and they came to an agreement that she would move him every 30 minutes instead of the every 2 minutes he was asking for. She also massaged his legs to help him with his pain there. So, hopefully this sleep is going to give him a jump start. Mom called the ALS MD who is away for a family emergency, so there will be no talking to him, but his nurse gave Mom lots of good information to use and will be coordinating all that with the MD who is currently treating him.

Turns out he was indeed self-medicating with his Bacolfen - he was taking 4x more than the dosage on his pill bottle. He told Mom that he talked with the ALS MD at the last clinic about increasing the dosage, but Mom doesn't remember the MD giving him the Ok to do so. It's not coincidental that his vomiting started the day of the last clinic.....looking up the overdose symptoms it matches closely with what we are seeing with him:

Baclofen overdose symptoms may include muscle weakness, vomiting, drowsiness, dilated or pinpoint pupils, weak or shallow breathing, fainting, or coma.

On top of the lack of sleep. What a mess this is. So, hoping for better news this afternoon, but he had a good night after some persistance from my aunt. Going home tomorrow for a few days to help out and visit.

 

[indigosd]

whewww! Sounds like the situation is improving! You may want to look into Hospice while you are at home. hugs to you

 

[kedevlin23]

whewww! Sounds like the situation is improving! You may want to look into Hospice while you are at home. hugs to you

They already talked to Hospice last week when Mom threw her back out trying to lift Dad - they have too much $$ from their pensions to get hospice to come in. I'm not sure I got that entirely correct, I'm sure there is more to that than what I state...but I didn't get all the details.

They really need to get the lift system as well if he's going to come home. However, he's already saying he wants to be put in the nursing home that Mom can't care for him like he needs - I think he feels bad and feels like he's a burden.

He just signed his DNR paperwork (even though we knew where he stood it wasn't in writing) and is talking a lot about dying....UGH this is just the worst.

going home tomorrow - want to talk to him....even if he is delerious I want to tell him everything I need to.....basically that we all love him very much. going to be so hard to see him like this - he's always been such a strong outgoing guy.

 

[indigosd]

ohhhhh this just breaks my heart...I do NOT think that Hospice is one of those programs that you need to be income eligible for? Where does your DAD reside? Maybe if we knew where we could help you help them more effectively. hugs