Dad's feeling 'bad'

[st123]

How do I know when Dad needs to see a doctor? Yesterday he threw up when he woke up, but then he seemed to be OK the rest of the day. Today, he seems really under the weather. He wants to know why he feels so bad. He said it's just a general 'bad' feeling - nothing specific. He has even less energy than usual and his speech is much worse than usual. He seems to hardly have the energy to try to speak.

He doesn't have a fever, though he says he's feeling hot and cold. His sugar level is OK and he's still eating. He doesn't think it's his heart. He uses the bipap most of the day.

Will he just have days like this with ALS? Thoughts on what else I should be considering?

Thanks,

 

[Georgia Peach]

My husband has good days and really bad days. Fortunately, today was one of his good days. He got out of bed, our son and his girlfriend visited to bring home cooked food for lunch, he ate a little, and he was up for six hours.

Did your dad overdo it yesterday? He could have a touch of a virus. Was he around anyone else that was sick? Has he thrown up before?

For days in the past weeks and months my husband would throw up and sometimes have three bms in one day. I was worried sick and we tried a variety of meds for his stomach ills. Those issues seemed to have passed. I'm still not sure what we did that helped. One thing that someone shared with me is that whatever your dad had before ALS, he still has now. GERD, acid reflux, ulcers, whatever. I always blame ALS but that's not always true.

Hope he feels better tomorrow. We ALWAYS have issues on the weekend. Do you go to the emergency room, etc. We've decided that we've made the last trip to the local ER. They don't even know what to do for ALS. They ALWAYS put him on oxygen and I tell them that's not called for with ALS patients and then after he's somewhat stabilized they send us home. One time at 5 a.m. after spending the night in ER. Good Luck. Your dad is so lucky to have you on his side.

As I told the VA nurse practitioner, I'm not a nurse but I practice medicine.

 

[Katie C]

Has he had any choking episodes lately? Vomiting can lead to aspiration.. aspiration can lead to pneumonia which can lead to vomiting long before there's a fever. If he vomited and he's feeling generally lousier than usual, I would put a call in to his doctor. I would also ask the doc about CO2 levels.

 

[st123]

Thanks, Evelyn. He definitely had 'pre-existing' conditions. I'll try to keep that in mind, though none of them seemed to make him feel like this before. And, yes, of course it has to be a weekend. It seems like that how it was back in the day whenever the kids had something unusual, too

Hi Katie, yes he has been coughing/choking more when eating lately. I thought that he would have a fever with pneumonia - I didn't realize it might start much later. He had pneumonia in December - before we finally got the ALS diagnosis. I'll ask about the CO2 as well. That's definitely one thing I'm not at all familiar with yet.

I really do hate the ER. Wonder if I should call his primary doctor? It seems like all they do these days is tell you to go to ER (kinda of a general CYA thing). *sigh*

 

[Katie C]

I'd call his doc first... ER always worries me with all the "germy" folk!

 

[cervus]

I would ask about CO2 levels too. Bob had episodes of coughing and heaving in the mornings. Some reflux. ALS clinic suggested taking TUMS and it really worked! But, as it turned out it was also an indication that he wasn't expelling enough C02. It's wonderful that you're staying on top of things and taking such good care of your dad. Yasmin.

 

[momap53]

Sharlene, I'm so sorry to hear that your Dad is not feeling well.
You've received some good advice here.
I know what you guys mean about the ER. They suck.

 

[penny1]

Stay away from the ER in possible. If you must go watch them like a hawk, if you have to make a fuss. We brought my husband to the Er for a possible blood clot in the lung. We told them over and over to use a drawn sheet to move him to the bed because his shoulders were semi frozen. I turned my back for 1 sec and some big male nurse grabbed in under his arm pit while he way laying out in his wheelchair and picked him up. the noises that his shoulder make poping and cracking could be heard across the room. He was near tears. Then they need to put him on a cat scan table, I helped and kept telling them to support all of his limbs. They MADE me leave while running the test. He comes out on the gurney and tells me they droped one of his legs between the scanner and the gurney! Lucky no blood clots. Bad news two weeks of shoulder and hip pain. Demand to stay with him at all times, they don't understand ALS. good luck Penny

 

[brooksea]

How is your dad today?

 

[notgivnup]

Hoping your Dad is doing better today sharlene. {{HUG}}

 

[st123]

Thanks for all the help. All I got from calling his Dr's office was a recording to go to ER. I was afraid of that. I'm going to e-mail the Clinic nurse and ask her what I should do in the future if we have a situation like this.

I thought that Mom and Dad had the cough assist routine worked out, but Mom told me today that Dad has not been cooperating. Argh. So, I had him do it twice so far today and brought up a lot of stuff (sorry, I know that's gross). For some reason, he'll cooperate with her when I'm standing there. I'm concerned as he still says he feels bad, but he actually seems a little better to me. Watching him here at home is still outweighing the ER option for me. Guess we'll wait it out a bit.

He has been walking around the house when he's out of bed - against the PT's instructions, but I think that's about over. He admitted his left knee is giving out so I told him we have to use the wheelchair. It's a loaner transport chair and a bit cumbersome, but seems like it's now necessary and I think he's going to do it. Meanwhile, we're waiting on the new wheelchair. I think I'm going to have to have a couple of doorways widened. Sorry, now I'm rambling!

Thanks again for all of the information and concern, everyone

 

[Barbie]

Sharlene
it sounds like you are really a rock for your dad and mom. I think you are doing the right thing by waiting it out for now.

 

[Ms. Pie]

Sharlene, your folks are so lucky to have a loving daughter like you. Xoxoxo!

 

[notgivnup]

Sharlene you are such a blessing for your mom & dad. Bless you!

 

[st123]

Thanks, guys, but I'm not all that. You all have been amazingly helpful and inspirational. Thank you!