Some input for someone who just got into this

canary

Registered User
Feb 25, 2014
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South coast
I seem to have missed this sad development.
I'm so sorry to hear about your dad
I'm sure your grandma's comments must be unsettling, but its just the dementia talking
 

JohnGroban

Registered User
Oct 28, 2020
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A small update:
- he is fighting with everything he has.
- he managed to stay three days without ventilation last week, but then got a fever and they had to give him antibiotics and reconnect him again.
- They connect and disconnect him multiple times by day, but he is cheerful.
- Spoke with multiple nutritionists and we made him a menu to gain weight. He has 54 now, managed to get 5 kg in two weeks. I am going to the hospital 3 out of 7 days with different foods for him.
- But still, no idea if he will make it. He needs the strength to fight the pleurisy that is causing all of this.
- To make things worst, COVID cases are going to the roof here. Sadly, we had a really bad vaccination process and we are close to a new lockdown so going to the hospital will be even difficult.
- But he is fighting. I am so proud of him.

Grandma:
- she is ok, the old head nurse came back again and moved her with her old roommate, the one she had on and off moments. They missed each other and they moved her on her own demand.
If she is good then I am good. Same old wanting to go home, but she is ok overall.

As for myself, I am super tired, don't feel that good lately to be honest with all of the stress. But I am trying to stay positive because I am doing all I can.
 

canary

Registered User
Feb 25, 2014
25,018
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South coast
I'm glad your dad is still fighting. Fingers crossed for a good recovery

Your grandma and her friend remind me of my brother when he was a little boy and mum found him fighting with another boy. When she remanstrated that he was fighting with his best friend my brother retorted "I know he's my best friend - and I hate him............". ( he didn't really)
 

lemonbalm

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May 21, 2018
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I have all fingers crossed for your Dad @JohnGroban . A fighting spirit can make such a difference.

I’m glad to hear that your Grandma is back with her old room mate. Sweet that they missed each other. They will no doubt argue quite happily together and keep each other amused.

Try to look after yourself. Eating and sleeping aren’t that easy when you are so stressed but do your best. Sending a positive vibe hug to you ?
 

JohnGroban

Registered User
Oct 28, 2020
248
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After all that happened with grandma, I am worried dad will follow these steps.
Went today to our usual visit and mum told me he was very, very angry. She never saw him like this, ever.
The doctors said it's normal, it's been 2 months since he is like this but I am worried.

He is fighting, but things are not improving as expected.
 
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lemonbalm

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May 21, 2018
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I’m sorry your Dad isn’t improving as expected. He must be getting frustrated and anxious that he is not getting better as quickly as he had hoped. Thinking of you and very much hoping for encouraging news soon.
 

JohnGroban

Registered User
Oct 28, 2020
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I think today was one of the hardest days of my life. Mum decided that Thursday we should go and buy a resting place in the cemetery and be ready for when we get the phone call.

Sure, that is needed, but it hits you in a way you couldn't imagine. For me it's the first time I've been in this situation, to do this. It's part of life, sure, but how do you cope with the idea?

The past two weeks I've tried to find the logic in all of this, how it happened and still cannot find an answer. I was thinking COVID hit him last year, without knowing, but I was close to impossible, he had no signs and was locked in the house with mum. I blame the shock with grandma, but how can a shock go as far as this?
So many questions that define logic.
 

canary

Registered User
Feb 25, 2014
25,018
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South coast
Sometimes there are just no answers.
Be gentle with yourself
((((((((((((((((((((((((((hugs)))))))))))))))))))))
 

lemonbalm

Registered User
May 21, 2018
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I’m sorry you are feeling so bad. Perhaps your mum will feel better preparing for the worst. Best not to try and find the logic in some things and, although this may sound trite, carry on hoping for the best ? . Is there still a chance of recovery for your dad?
 

JohnGroban

Registered User
Oct 28, 2020
248
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I’m sorry you are feeling so bad. Perhaps your mum will feel better preparing for the worst. Best not to try and find the logic in some things and, although this may sound trite, carry on hoping for the best ? . Is there still a chance of recovery for your dad?
Yes, there is.
He is lucid, he doesn't take painkillers, 1/2 days he is breathing alone, but soon he gets tired and they need to ventilate him again.
He put some weight, but on Sunday a nurse told me they had to throw half of the food I am taking him, he refused important things we brought after we talked to a nutritionist like nuts, things with protein, etc.

Our chat with the doctors is that he is not responding like they hoped so they will not say if he will make it or not because they have no idea. Their take is that his pleurisy and Ankylosing spondylitis are killing his lungs and do not back down at all.
He is in the best ICU in the country so there is no other place where I can take him.

The doctor said if he will not breathe alone, he will remain like this until some infection, bacteria, kills him.
 

Scarlet Lady

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Apr 6, 2021
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You are in such a bad place, John, my heart goes out to you and your family. All digits crossed for your dad, he seems like a fighter. Stay strong.
 

JohnGroban

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Oct 28, 2020
248
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Thank you, Scarlet Lady.

Today they decided to keep him ventilated because of mucus secretions. They are sending those to the lab for them to took again look at them.
The last time they let him breathe alone (last week) he got pneumonia.

I am doing the best I can to keep it together, but it is quite hard, plus I have to focus on my job a lot.
 

lemonbalm

Registered User
May 21, 2018
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Everything crossed for your Dad and hoping that his fighting spirit gets him through. I hope you are managing to eat and sleep. Sending more strengthening vibes to you.
 

JohnGroban

Registered User
Oct 28, 2020
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I am eating well, next week I plan to start again working out and maybe try to meditate a bit.
I sleep well also.

I am trying to stay sharp because, if it wasn't enough, we are going through the worst wave of covid we have had so far. There are no places in the ICU left in the country. So even if I had the two jabs, I still have to be careful.
 

JohnGroban

Registered User
Oct 28, 2020
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Got a call today from the hospital. The results came back and he has aspiration pneumonia.
Basically, food is going into his lungs instead of his stomach. Monday they will do another surgery on him to install a tube.

I am lost for words. I've never heard anything like this ever.
None.
 

Jaded'n'faded

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Jan 23, 2019
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High Peak
Another surgery? Is it really in his best interests? Do you know if the planned tube is for 'peg feeding'?

If so, please be aware that this is not something that is universally recommended. If you google it you'll learn a lot more...
 

JohnGroban

Registered User
Oct 28, 2020
248
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Another surgery? Is it really in his best interests? Do you know if the planned tube is for 'peg feeding'?

If so, please be aware that this is not something that is universally recommended. If you google it you'll learn a lot more...
Yep, peg feeding. But temporary.
According to them, there is no other way. Food is going into his lungs and is causing aspiratory pneumonia.
Basically, a lot of food is going into his lungs instead of his stomach.

I don't understand how this is even possible but could explain a lot.
 

Arty-girl

Registered User
Jun 29, 2020
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Can you point me out to some relevant ones and not some hocus pocus fake news? Would much appreciated.

I double checked the medicine with other friends and they say it is quite good, so I am more relieved a bit after that.
Tomorrow we are going there to bring her some other clothes, get her the medicine and also give some present to the staff, some cookies, something.
Have a look at YouTube videos by a lady called Teepa Snow or her website teepasnow.com. I learned a lot from this true expert and she informs you in a easily understandable way, even using mild comedy (you might think that inappropriate but you'll understand when you look at them).