Wish it was light but...

Clearwater AL

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I’ll check in. Wish it was something light but it’s not good news and
ends with warning.

I just got home, two days ago, from being in the hospital for 5 days.

Diagnosis… Aspiration Pneumonia. (Food particles.)

Before that I had coughing spells so bad my stomach and chest
muscles got so sore and painful I could not sit up. (What I was
spitting up had a horrible taste). Was running temps of 100.9,
102 once up to 104 but back to 100.9. They had to take me to
the hospital by ambulance (EMS). I was put in a Special Care unit.
Three bags of fluid hung on the rack. Pain medicine by injection.
So many blood draws they ask if I’d be ok with a possible blood
transfusion if needed. ?

Whoever designed that hospital bed should have been forced to
spend 5 days in it with all the tubes just taped to his/her arms.
On the last day they asked to do a Barium swallow study.
Fortunately I have that scheduled at my next ALS clinic in
January. There was no way I was going to spend another two
days in that hospital bed. I said no because I had the same thing
to be done in January. I got discharged.

The warning… anybody who has swallowing issues please be
careful. I’ve had swallowing issues apparently wasn’t careful
enough. You don’t want to go through what I just did. From
the falls to this I am wore out. I hope what I did have somewhat
comes back.

Sorry for posting a such downer.

PS. I may have posted this on the wrong one. Mods, maybe
move it to the "Wednesday or anytime" one.
 
Last edited:

Nikki J

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I am so sorry Al. I hope you feel better. I think this deserves to be a separate post. Would you like it in general so CALS can answer too or would you prefer it stay here. Your choice.

you are so right about swallowing issues.

if a feeding tube is in your plans let your clinic know what happened. You shouldn’t need a barium swallow to prove you need one and January is a long way away. I have posted about my sister before. She finally agreed to a tube but for various reasons it took 3 months to happen. By then she was very weak and emaciated and it was a tough recovery. If a tube isn’t your choice I respect that of course but if it is don’t wait

feel better
 

Clearwater AL

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Get Real
Yes, move it to where you feel best so CALS can reply too. I have messaged the Clinic,
waiting for a reply. Thanks for the concern.
 

affected

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So sorry to hear this Al. Hospital for PALS can be a nightmare. It must have been scary for Anne as well.

Can I suggest taking a probiotic or live culture yoghurt as the antibiotics for pneumonia can be rough.

Hopefully when you contact your doctor/clinic, they can have the barium swallow moved forward, or at least can get the feeding tube organised asap regardless.
As you know, you can have it in place before you completely need it, so it could be worth starting that process now in case there is a bit of a wait?

Please take care now, pneumonia is exhausting, and sleeping in a crap bed is too.
 

swalker

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Al, I am so sorry you had to go through this! Glad to hear you are out of the hospital.

I hope you feel better soon and regain some of what was lost during your time in that miserable hospital bed.

I sleep in a hospital bed every night, but it is incredibly comfortable and supportive. I can't imagine having to spend a week in the kind of bed you endured.

Steve
 

wmilo

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Al, very sorry to hear of the pneumonia and hospital stay. You have been going through a very rough patch. I agree with the caution about being careful swallowing. I have to be mindful when drinking liquids and had some difficult coughing spells as a result of not paying attention.

Hope you are on track to regain some ground.

Regards,
 

lisa g

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Al, sorry to hear about your recent experience. Swallowing issues are the worst and can be pretty scary. I just had a barium swallow test to make sure I wasn't aspirating. Hopefully a peg will be ordered so you don't have to go through anything like that again.
 

vltsra

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Dear Al sorry to hear about your hospital stay. I hope you are on the mend.

We decided to go forward with the peg a little early when my PALS was having some initial aspiration issues. He had a scary episode on his birthday when he had a little cake. Soon afterward we stopped feeding him by mouth and he is now 100% tube fed. Yes it sucks but we have not had to use the cough assist anywhere near as much as before.

V
 

[email protected]

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Sorry to hear about all you endured. Hope you can recover what you may have lost. I'll take your experience as an object lesson for myself. I'm having more swallowing issues (coughing/choking) and need to exercise more care. I do have a feeding tube and may need to use it more. Wishing you the best.

Ed
 

Bestfriends14

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Oh, Al, I'm so sorry you went through all you have in the past several days. Thank you for choosing to post this in general as this is a big help for CALS, as well, in keeping vigilant in caring fir their loved one.
 

affected

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Hope you can check in and let us know you are improving now you are back home Al. Thinking of you.
 

lgelb

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Here's to a speedy recovery and a smooth tube placement when it's time, Al. Stay hydrated and try to take it easy!

Best,
Laurie
 

Believer

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Al, downers are acceptable because saying it can relieve stress. It also helps to know other people care. My PALS just came home from the hospital last night with a PEG. Within a matter of days he went from coughing at each meal to choking on clear liquids. He was dehydrated and spent 5 days in the hospital before getting the PEG on Friday. Our advice would to get the PEG as soon as possible. I didn't fully understand that advice until this week. Bless you.
 

bhg

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Al, your post is timely for me also. I have mine scheduled for this Wednesday. Being slow progressive, I kept putting it off. Had the covid test yesterday. Just the van ride there was exhausting, so am not looking forward to it at all. This thread added the dose of reality that I needed. Thanks.
 

Nuts

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Al, I'm so sorry to read about your hospital stay. Please, please take your own advice and be more careful!! Only now am I beginning to appreciate how difficult a decision it is to have the PEG tube placed. I was so focused on trying to keep Matt safe that I wasn't able at the time to process how hard that kind of decision was for him (in my mind we had no choice--in order to keep him with me longer it was just necessary and so any other choice was impossible). As for the bed in the hospital, some just don't understand the extreme needs of a PALS. I used to start new hospital stays for Matt with a discussion of the bed and mattress--sometimes if you tell them what you need they can locate it. We actually had a couple of beds swapped out in ICUs. My best wishes to you, my friend.
 
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