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worrieddaughter77

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Hello,

Sorry I've been away from the forum for a long time. Two teenagers, one baby, and full time care of my dad (shared with my mom) was tough.. And then... We decided to move from the USA to Finland. It was my husband's idea actually... He dragged us in June 2018 because he thought we could somewhat get our lives back here. Nursing homes in Finland are amazing, so we put my dad in one that is right downstairs our apartment complex.

So yes, our lives did get better. 15 well trained nurses started taking care of my dad instead of me and my mom, while we still can visit any time of the day for quality time. My dad got much better too, it was the greatest half a year possible given his condition.

But a couple of weeks ago my dad got a flu. And he doesn't seem to be able to recover. He has lots of congestion, his CRP is 12 though, so no bacterial infection, but we are all very worried he's going to get pneumonia.

I came back here for support.... I don't know what to expect now. My dad hasn't have an upper respiratory infection since his diagnosis in Oct 2017, so we haven't been through this yet. His oxygen is still 94, but he's pretty much completely lost all of his muscles by now.

He refuses any medication or food since he's not feeling well and is generally very sad and probably scared...

Is it possible for a PALS to get over a flu when they are completely bed ridden already? He can't swallow or cough anymore, he can't talk. He has a vast, cough assist, bipap.

Thank you for your answers,
Anna
 

Nikki J

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I am happy to see you back. I was just thinking of you abd glad to hear your dad is still hanging in there

My sister survived pneumonia when paralyzed with feeding tube and eyegaze. It was a rough few weeks but she made it. She had good nutrition and hydration though abd was getting out of bed ( total transfer) to reclined wheelchair. Why is he bed bound?
 

worrieddaughter77

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Aww Nikki, so nice to hear from you! I how you are doing ok too!

Well he has this terrible reflux, so he refuses to get into his chair as he wants to stay in the only position that he finds comfortable, which is half reclined in his bed. He got his tailbone hurting a lot, but he still prefers this position. We can't find a good combination of drugs for his reflux as we are adjusting to the differences in medication in Finland. The feeding tube is narrower here so the omeprazol capsules slow release do not go through the tube anymore! And he needed to get his tube changed here... Ughh since then, we can't get his reflux under control...

His bed is very nice though, he can control the multiple recline options with a tap of a finger that he can still somewhat do, or the nurses help, and the mattress does the massage to prevent bed sores. He also has the eye gaze to communicate now.

I'm so glad that your sister made it through the sickness Yes it is so rough, since this can be so dangerous.... I think he's scared too...
 

KarenNWendyn

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Welcome back, and I’ll glad to hear the move to Finland was helpful, at least for a while.

Here’s a thread on colds:

https://www.alsforums.com/forum/general-discussion-about-als-mnd/42003-my-pals-getting-cold-help.html?highlight=Colds

Yes, reflux can lead to aspiration which can create more problems with his lungs. There are forms of Omeprazole which can be given by tube. Here’s what I found in my online medical textbook:

Nasogastric/Gastric tube:
Oral suspension (using packets): Add 5 mL of water to a catheter tipped syringe and then add contents of a 2.5 mg packet (or 15 mL of water for the 10 mg packet). Immediately shake syringe and leave to thicken for 2 to 3 minutes; shake syringe again and within 30 minutes administer via NG or gastric tube (French size 6 or larger). Refill syringe with an equal amount of water, shake, and flush remaining contents through NG or gastric tube
Oral suspension (using capsules): The manufacturer of Prilosec does not give recommendations for extemporaneous preparation of omeprazole capsules for NG/OG administration. Consider using the packets for oral suspension.


I realize that sounds complicated. I think that if you are able to talk to a pharmacist, they can inform you on what preparations of Omeprazole and similar drugs (known as Proton Pump Inhibitors) are available in Finland for use with a tube.
 

KimT

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I had a lot of breakthrough reflux with Prilosec and some of the other PPIs. Has he ever tried Aciphex? That was the only PPI that allowed me to eat chocolate again. I had horrible GERD, so bad it caused my heart to flutter all night long. I had to sleep sitting up until I started Aciphex. The pill I take is time released but it is extremely small.

Your pharmacist will know all the options. When I want answers I call a pharmacy in Canada because they are much more willing to spend time on the phone and solve problems. I suspect Finland is similar. Give it a try.

Before Aciphex I aspirated several times and, even without ALS, it was very scary and I ended up coughing for hours after.

I'm so glad to hear your father is so close and has good care.
 

worrieddaughter77

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Thank you Kim, Karen, and Nikki for your responses! WE]e are trying to figure out the combination of local medications and doses for reflux with my dad's doctor.

It is frustrating at times, as they usually prescribe half of the dozes that are considered normal in the US, because they prefer less side effects. Slightly different system and culture...
 

worrieddaughter77

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Just an update, my dad has recovered after taking a course of antibiotics. He's back to his normal self again and I hope we have many more months/years ahead of us!
 

Nikki J

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Awesome. Thanks for the update!
 

Jrzygrl

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Yay! Glad to hear he's better.
 

KimT

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That's great news.
 
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