My darling is in ICU

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poppies

Distinguished member
Joined
Apr 2, 2013
Messages
233
Reason
Lost a loved one
Diagnosis
02/2013
Country
SA
State
Kwazulu Natal
City
Durban
Hi everyone. Please keep my darling PALS, Iven in your thoughts and prayers. He was admitted into ICU yesterday afternoon with severe pneumonia. He has been in great distress for the past week and eventually could not take it anymore despite the morphine taking the edge off. I am not allowed to stay in ICU with him or go in at meal or bath times, only visiting hours. I showed the nurse how to use the alphabet board and asked her to show the nurse at change over of shifts. I am just hoping they have done this. I will see how he is at 11am CAT. We tried to get him into Hospice on Friday and again Sunday to avoid hospital but they did not have a bed for him until today (Monday). As it turned out that was too late. Today I am going to arrange a hospital bed for home and make some changes to our living arrangements so we can make him more comfortable when he comes home. I am still praying to God but have to admit that I just don't understand why he has to suffer so very much and for so long. He doesn't deserve this.
 
They can treat pneumonia pretty well.

Good luck.
 
Poppies, so sorry to hear about Iven. I will be thinking about you both. And no, no one deserves this.

Is there a hospital or unit director to whom you could appeal to see/help him more often, for the sake of his health? I cannot think that the hospital sees this precise situation too often and usually there is a procedure for exceptions.

--Laurie
 
Oh Margaret, how awful.

Stand your ground and insist that you can be a shadow to everyone else in the ICU if you feel you need to be at his side more.

I'm so sorry that Iven is going through this, and that you are left feeling helpless as we always do. Please keep us posted, I'm holding your hand my friend.
 
I am so sorry. Prayers for all of you. My sister just survived pneumonia and ICU. Agree it is special circumstance and you should be granted an exception to stay with him can you enlist his doctor and/ or nurse to help appeal?
Take care of yourself. Make sure you eat well and stay hydrated
 
Poppies, I will keep you and Ivan in my thoughts and prayers. I will also pray that someone intervenes and allows you better access. You are right he doesn't deserve this, no one does. Take care of yourself and remember "you never know how strong you are until being strong is the only choice you have". Hugs and prayers.
 
I'm sorry, Poppies. This horrible for both of you, I'm sure.
If you can keep him comfortable at home, I think it's the best thing to do. It is possible
For a person getting I. V. Pain medicine to go home with it.

If he is upset and that is making him struggle or feel worse, he can also receive Ativan, which will
Take away his anxiety. It will also make him sleepy, so you have to weigh the pros and cons.

Take care,
Jennifer
 
Hugs and prayers for you and Iven.
 
Keeping you and Iven in my thoughts. I hope he's back home with you soon.
 
Thanks everyone for your thoughts and prayers. Hospital is not going well. The nurses did not explain Iven's needs at turnover so each time the shift changed the new nurse had no idea how to understand him or how to work with his mostly paralysed body. In the morning I phoned to find out how his night was. The nurse said he slept the whole night. I was very surprised as this is not the norm, even with the drugs. When I got to the hospital and asked him he said (using his alphabet board) that it was a nightmare. He said the nurse didn't understand him so she just ignored him. He asked for her to call me (as they had promised to do if he became distressed) and she refused. On top of this it turns out that the two doctors that diagnosed severe pneumonia on Sunday were wrong. The chest X-Rays show that there is no pneumonia. The new doctor assigned to Iven only arrived to see him Monday afternoon at around 3pm. I asked her if she understands Iven's underlying condition (MND/ALS) she said yes she knows about Muscular Dystrophy!? I said those are two very different things. It turns out no one in ICU or the doctors have any real knowledge about MND/ALS. The sum of what she knew was that a famous rugby player in South Africa has it!? She insisted that he must stay in hospital for five days to complete the antibiotic he is being fed from a line inserted into a stent in his groin and being fed directly to his heart. She said she ordered to more tests to find out whether there is indeed an infection causing his temperature and where it is. She said his protein levels were very high - should be 5 and were 70plus (does anyone know what this means?). This morning I am going to try to get the Hospice doctor to see Iven to assess his condition and advise us on what to do. I just want to get him home or to Hospice where we can be with him more.
 
I am so sorry for your troubles smh it is sad when the ppl you're supposed to trust to help you are the ones who act the worse. There should be special rules in place for ppl who can't communicate. I would complain something serious they treated him bad like they violated some of his rights. Wow unbelievable
 
Hi, Poppies,

In Iven's present context, the most likely explanation for a high protein count without other abnormal results(?) is dehydration. I hope that at least they are hydrating him! Was he dehydrated before the hospital? When was the last protein count drawn? Have any other markers for inflammation/infection been seen?

The other common causes are pretty much diseases that I doubt apply or would not be treated at this point.

Personally, I would take him home/to hospice/somewhere else, as receiving a broad-spectrum IV antibiotic in a hospital unequipped to care for him (or anyone else, if they can't get pneumonia right), especially with you elsewhere, holds more risks than possible antibiotic resistance down the road.

I am sorry.

Best,
Laurie
 
Oh Margaret how distressing!

Bug that hospice doctor until he/she just goes in there. Don't stop, we have to be a strong advocate for our PALS. I would also be considering refusing to leave him alone - tell them to bring security and the head of the hospital if they want to turf you out so they can ignore him again.

I'm afraid it's so common in Australia - if our PALS can't speak, the nurses are just lovely when we are at their side, when we leave they just walk out the room and ignore them.

I experienced similar problems with no handover giving full information and so the next shift are clueless. I would bail up every new nurse walking into the room when Chris had pneumonia and insist they go to his file and read all I had taken time and effort to write. They would be quite upset, but I would kindly but firmly insist they could not touch him until they did. Every single one I did this to returned and apologised to me and then thanked me for explaining his situation and needs so well.
 
Following on from Lauries post - I got him out of hospital very quickly when he did have pneumonia because I was able to convince the doctors that he was receiving sub-standard care there compared to what I could give him at home. So as soon as the most critical part was over, they gave the nod and I whipped him out of there so fast I'm sure half the furniture in the ward must have got sucked out in our wake!

If they are giving antibiotics without any culture to know they are giving the right one, then they are just shooting blind. Anyone can come home with a picc line if you have palliative nurses that can come and add new bags.
 
Oh Poppies, I have to agree about refusing to leave. You have enough neglect and cruelty (intentional or not) to justify a belligerent stand if that's what it takes. I'm not sure of your system in SA, but here I'd be screaming lawsuit and lots of bad press as well as complaints to medical boards and any other governing agency.

Wishing you both comfort.
Becky
 
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