My darling is in ICU

[lgelb]

No doubt, Tillie, they could do a PICC line but since we haven't heard a justification for abx yet, I would consider even PICC line/continued abx risks more than needed at this point. Of course, we are advising based on sketchy info. But I think we agree that he should be in a palliative environment with Margaret at his side.

 

[Loverly]

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

Yup. I never left Kathy in the hospital alone, simply because not one nurse had a clue. That's not to say that they aren't skilled and able to learn, but I have had to educate every single nurse who has come into contact with Kathy.

JEn

 

[affected]

I agree Laurie but he already has a picc line in and I was just saying that if they use that as a reason for him to stay it's not reason alone ...

 

[Janie H]

Nothing worse than being in the hospital and not being able to comuciate,I am fighting pneumonia myself,cough assist is my best friend,prayers for you and him.

Janie

 

[lgelb]

Definitely, the line is not a rationale for staying, whether maintained in transfer or not.

 

[Ells]

Dear Poppies,

I can only offer my sympathies to you and Iven at this distressing time. It must be very frightening for you both.
I'm sure they'd be falling over themselves to provide Grade A care if they had Joost van der Westhuizen in that bed.
Hope you get a hospice bed or get him home very soon.

Ells x.

 

[chally]

Hey poppies, keeping you in my thoughts and prayers. Love ya chally

 

[pittsburghgal]

Poppies,
My heart went out to you reading your description of your treatment in the ICU. My husband was hospitalized for 10 weeks last summer, half of that time in the ICU. Luckily, their visitation rules were very flexible and I could be there any time unless they asked me to step out into the waiting room while they bathed him or transferred him to a chair. He needed intubation due to respiratory arrest from aspiration pneumonia and a subsequent tracheostomy. I saw so many providers who would ignore him when he was unable to speak. So many would not take the time for him to use an alphabet board or to try to read his lips. This was so very frustrating to him. I really think the hospital visitation rules need to be flexible for an ALS patient when the caregiver is the person most capable of caring for them. Many hospitals have a patient representative who you should ask to speak to. Telling you that your husband needed to stay in the hospital to complete IV antibiotics with no evidence of pneumonia is ridiculous. You are always able to sign out of the hospital AMA (against medical advice) whenever you choose. I hope things are better for you now that your husband is out of the hospital.
Sharon

 

[affected]

Thinking of you Margaret xxxxx

 

[Gembead]

So sorry iven is so unwell, will keep you both in my thoughts and prayers, love and hugs Gem

 

[poppies]

UPDATE: After the most traumatic experience of his life in ICU (Iven's words) we moved Iven to Hospice on Tuesday afternoon. He was completely broken. Traumatised, anxious and exhausted from no sleep. It took a long time to get him settled but with the love, warmth and care at Hospice he has settled and has been resting and sleeping since then. He has agreed to a peg (after signing a living will determined not to have one) as the Dr explained that it is the only way they can give him meds and water to keep him comfortable. The trouble is within the past 24 hours he has completely lost the ability to swallow. He is dehydrating, still has pneumonia but is unable to take his antibiotics, and has a suspected bladder infection and has been catheterised. We are waiting to find out if a different hospital has a bed for him where he can be rehydrated and undergo the surgery for the peg tube within the next 24 hours. If the surgeon says he cannot fit the peg as Iven is too weak the Dr at Hospice said the only option is to start Iven on palliative care meds and allow him to die. I have explained this to him and he is at peace. What happens next is in Gods hands.

 

[poppies]

Wish I had you all near to hold our hands.

 

[Ells]

Oh Poppies, what an awful situation.

Would they not even place an NG Tube?

My thoughts are with you both.
We're all holding your hand.
Love Ells.

 

[affected]

Margaret I'm sending you the biggest hug.

I'm so glad he is at the palliative unit now and can rest and is being cared for.
What hard decisions, please let us know as you can, but just take as much care of yourself and the kids as you can while they are now looking after Iven for you.

 

[scaredwifetx]

Sorry Poppies. My thoughts and prayers are with yo, Ivan and your family. May God wrap you in his arms and I am sending a virtual hug.