Dad, 77, in ICU, double pneumonia, now issues with kidneys

[Preciousfamily]

Hi everyone, I joined today and read some of your amazing posts, and some miraculous stories

Joined the ICU rollercoaster 16 days ago when my Dad got rushed in to Intensive Care and intubated due to double pneumonia. Normally a health, active 77 year old.

They said he wouldn't make it through the night without this procedure.

They said he would be like this for at least 7-10 days, and that he would never be the same man again IF he survives.

Well gradually every day we've seen tiny improvements, ..... and then they removed the intubation tube after 4 days... with CPAP he didn't cope and we again had the scary doctor conversation to say that his body is too weak and of it happens the next time they try we will have to let him go...

Devastated, but then a different consultant took over and revisited Dad's notes, she called us in the ask more questions and said it had been written he was normally an old frail man!! So she said that changed everything and there were options, such as a tracheotomy etc...

After leaving him to rest for a few days they tried again and he coped without the ventilator.... he's conscious and doesn't seem confused etc.

They took him totally off the oxygen a few days later, and we thought he was doing really well. The infection markers reducing little by little, and he's gone from only being able to blink to communicate, to forming words to ask questions (VERY whispered and takes a lot of effort).

As you are sadly most probably familiar, he can barely move, the physio team are trying to help.

He's desperate for a cup of tea, but he's still on a feeding tube and they tried water as a test but he coughed a lot... he's so upset.

Well we thought these baby steps were great compared to the sinister picture pained a couple pf times but then yesterday we were called into the dreaded 'room' and they said they arw concerned about Dad's kidneys and his heart to some extent, as he did go into prgan failure and his body needs to work on its own again....

I know they need to prepare us for the worst, but I'm so scared, I can't control my bladder when I visit every day. They said the renal team will visit in a few days to assess him, I don't know what that means. I know the dialysis is different in the renal unit compared to the one they use in ICU, but he's too poorly to move between hospitals.

They also pretty much said that he's on do not resuscitate because his bodies so weak, it will be too weak to fight anything if they bring him back and he will be worse

I thought every little step we were making was in the right trajectory, still not out of the woods but every day is a 'win' especially now I can communicate with him. This is such a blow ansld I am worried sick (literally). If anyone has any similar circumstances or words of wisdom, I don't really know what I'm asking, it feels better writing all this out I guess.

We have sat with every day, I've made sure I've spoken to him and told him things I think he'd be asking when he couldn't communicate, I've broght pictures in, fidget toys to try to encourage hand movement.

Now he's desperate to drink, and the sponge with water on is vile, I have bought him some different flavours (berry) for the nurses to dip the sponge in. He also keeps asking for his mouth to be cleaned as he coughs stuff up, and the nurse has to help suction it away, but hos mouth tastes horrid

Any ideas what u could get him to help? (In the uk) I was thi k8ng a nice minty natural lip balm, and maybe an atomiser spray which is really fine that can hold flavored water/mint or other things like pineapple to spray in his mouth? (Subject to nurse approval) I also had chemo a few years back so know in a way how horrid a dry mouth is, I could look at biotene gel which you pop a bit in your mouth to soothe dryness.

Sorry for my brain dump. Any ideas,encouragement anything I gues..

Take care

L XX

[Lux95]

Hello,

I was in the ICU for a month - 3 types of pneumonia, wasn't expected to live, etc, but after 11 days intubated, a tracheostomy worked and I recovered. During recovery, a weekend duty nurse brought in a dry mouth swab that was citrus/orange flavored, and it was great - it helped more than anything else, and tasted refreshing (seemed like a packaged foam swab on plastic applicator). After she left, I asked for it from others, as best I could briefly whisper, but no one knew what it was. That isn't much to go on for the dry mouth problem, but maybe someone there might know from a rough description. Your suggestions might be just as good or better. If approved (depending on medication interactions), citrus flavors were like gold to me. Once I could eat again, I craved fresh fruit at every meal.

As far as recovery, as everyone is different it is hard to offer any practical advice other than to remain hopeful, supportive of your father, and be with him as often as possible. There are ups and downs. It does sound like the second physician put him on the right path to recovery. It was similar for me prior to the trach - I had developed fungal pneumonia, and the trach was their last hope. It worked. I started to recover, and came off sedation. I sincerely hope and pray your father will too!

Physicians probably see more losses in the ICU than successes, so they may be conditioned to expect the worst. But we shouldn't and our families shouldn't. In fact, I know it was the prayers, faith and hope of my family and friends that brought me through it, by God's grace, first and foremost. Be your father's advocate and don't give up hope.

Intensive care does severely weaken the human body. Sedation for intubation has the effect of a "hard reset" on us, making regaining strength, physically, psychologically and emotionally, a long and difficult process.

Having family there everyday meant the world to me, literally. It *was* my world, since I couldn't move, pick up a phone or tablet to listen to music, read, or even watch TV (a vision side effect I had from sedation). Laying there, staring at the walls gets really old, really, really fast. Caring for the person is as important as treating the illness. Obviously from your post, you love him dearly and that alone is perhaps the most important thing you can do. Without a doubt, it means everything to, and for your father.

[Sepsur]

I was allowed ice chips to suck which was never enough but something.

Having family around was really important, even if I didn’t have the energy to communicate.

[BigH63]

Hi.

I was similar to your dad. I had bilateral pneumonia lots of other issues but also had AKI so was put on dyalisis. Most of us were not given much chance of living 3x they called my family to attend, not a nice experience for them. I was intubated and had a tracheotomy and pulled through. The water thing and the sponge was great but no one thought to put any flavour on mine which would have been nice, anything that cuts through the gunk in his mouth would be good , citrus always works . I remember the sponge feeling like the bush you clean the toilet with so ruff and scratchy in a sore moth.

If he hasn’t got the talking valve in he’s tracheotomy tube, it’s very frustrating trying to get information across to family and nurses. Try and be patient with him but try the blinking yes or no if nothing else works. I don’t think spraying anything in he’s mouth is a good idea though could cause him to cough.

Having family around when your awake is great but us also exhausting he will be weak beyond belief. Hopefully soon the physio team with be around to help as well.

What they nurse or do told you at the start is right he might not be the same person that went into ICU , most it us aren’t for one thing or another, we have change. So trying to understand that and take on board what’s change is hard for family but even harder for us as we find the things we can’t do anymore or find harder or our mental state has maybe changed can be devastating and hard to come to terms with.

But fingers crossed and pray thing get better all the time.

Best wishes

[ForMyPapa]

Hello!

My dad who was 78 last year had been in ICU for 3 month for severe pneumonia. He was intubated much longer than your dad, but eventually, he was discharged to a general ward and then to a rehabilitation ward. He just came home at the beginning of June! For my dad, he is still not allowed to drink normal water and it has to be textured water as his pneumonia was aspirational (after having a surgery in his throat.) He still receives PT, and Speech therapy for swallowing training at home. But he is now going to his work in a cab! It was a long way to get to this point, but we were so lucky that his underline health was in a good condition and we met such dedicated staff. When he was really thirsty in ICU, wonderful nurses were giving him wet towel to put over his mouth. He was still thirsty but made it through.

I really hope your dad will pull through too! Sending you hugs!

[Preciousfamily]

Thankyou for all your kind, supportive replies, xxx