Update on my dad (and me)

Age 74, on oxygen support in COVID ward for 14 days, now day 25 on a ventilator.

He’s being treated for what I think is his 3rd additional infection.

He’s been managing well on 40% from the ventilator this week despite the infection and was down to 35% this morning.

He’s had 2 head CT scans and an X-ray to his shoulder and arm because he isn’t moving it. The scans were “unremarkable”. The doctor says not only is he not moving his arm, but he’s neglecting it, like he’s not aware it’s there.

No other organs seem to be affected.

Had a discussion today with the consultant to understand my dad’s and our wishes. They’re looking to try and liberate him from the ventilator in the next couple of days. They don’t think a tracheostomy would be fair on him.

He now has a DNRCPR in place which we accept, but they were looking for our input on if my dad should be reintubated should he require it. We haven’t given it yet.

They say that due the all the steroid treatments he will be susceptible to further infections and they think it would be unfair to reintubate him if he’s going to keep having infections.

It looks like the doctors have done all they can and we need a few miracles now - that he survives extubation, that he does’t get another infection, that the damage from the stroke isn’t permanent/too severe.

Can anyone share any experiences or suggest things I should enquire about?

Update on how I’m coping:

I left my partner on his own and moved in with my mum 3 weeks ago to support her, but since a really pessimistic call from a doctor last Saturday, I spiralled into deep despair and anxiety and stopped eating for 3 days. I’ve since been signed off work and prescribed a low dose of Valium which has really helped and I’ve started doing a jigsaw to try and keep me occupied. I felt I needed to suppress some if my emotions just now so I can objectively advocate for my dad, but now I’ve been asked, I’m unsure of what’s right. I have another call with the doctor tomorrow where I’ll be able to ask some more questions.

[FamilyHistorian]

This is so hard to answer.

I think the most important thing to say is that what ever decision you make you must never reproach yourself; you will make it out of love for your father. If he passes then keep his memory close to you both the good times and the bad as they are all part of him.

In my case I am 72 shortly to be 73. I was in hospital between Nov’19 & March’20. I had open heart surgery, pneumonia and sepsis. I had a trachy shortly after my op and kept it for 2 months. I wasn’t proned but I lost the use of my right arm due to muscle wastage. My family were called in twice and I pulled through. They were never asked the awful question. I had infection after infection including fungal. Yesterday my wife showed me the antibiotics I was on and when I googled them it was frightening what they were treating me for!

I don’t think I would have the mental capacity to make a decision for myself. I don’t have a DNR in place although my wife and 2 of my daughters do have power of attorney (health).

I wouldn’t want to live if I lost my mental capacity nor would I want to live in a home. On the other hand the nhs has spent a lot on getting me to where I am today and I would like to give them value for money

My heart goes out to you.

[Sepsur]

I hope your father responds well to all his care.

It must be so hard for you not being allowed to visit.

I know that is really important to look after your welfare. Your Mum will need your support what ever happens over the next few months. You will both need all your vigour when your father comes home.

We hold a friends & relatives zoom drop-in every Tuesday night from 18.50 GMT - here you can listen to others who have been where you are or you are free to ask advice in a safe and caring group.

[Malletus in reply to Sepsur]

Tuesday night family support group as Sepsur mentioned was a godsend for me when my husband was in ICU. It kept me going for weeks and the support I got was amazing.

[ROMM53]

Is a tracheostomy completely out of the question? My understanding is that weaning from a ventilator is more predictable when a patient has been ventilated for over 3 weeks. My husband (55) wasn’t considered strong enough to be extubated at 24 days without a tracheostomy being placed first.

But one of the risks of tracheostomy is post -op infection/sepsis. Again, much more likely with the high doses of steroids needed to suppress Covid inflammation /save lives in ITU.

Do the medics attribute the lack of shoulder /arm movement to his previous stroke ? Are the medics entirely sure that this isn’t Critical illness polyneuropathy as a result of muscle degeneration, the paralysing agents

and steroids used in ITU?

Repeated infections-bacterial & fungal-seem to be the norm when patients are ventilated for a long time.

All you can do is state clearly, in writing if necessary, that you hope that they will continue to treat him as long as your Dad isn’t deteriorating.

It’s so deeply traumatic being in this situation, all you can do is put one foot in front of the other. Best wishes to you 💐

[Hidden in reply to ROMM53]

Thanks for the info, I asked one doctor about a tracheostomy last Friday and they said it was a good question, but we weren’t there yet. I asked today and they said they didn’t think it fair to put my dad through it. A nurse friend said she didn’t think it was advisable. But I know it can help weaning. They seem to be happy with how my dad’s lungs are working. I called an hour ago and they said he was on 40% oxygen on pressure support mode with a little bit of PEEP, though I don’t know how much. His sedation is now down to 10ml Propofol. He still has quite a lot of secretions from his chest that they want to clear before removing the tube.He’s had a lot of steroids, so that’s probably part of the reason for not wanting to do a tracheostomy.

I think I need to ask more about how they’ve concluded he’s had a stroke as I’m sure they’re using that in their decision making.

I’m going to try and sleep now, but I have a long list of questions prepared. My mum is completely trusting of the doctors in their decision making. I do to, to a certain extent, but I just can’t be left with questions that could continue to haunt me.

[FamilyHistorian in reply to Hidden]

That is one thing that I didn’t understand about being reticent to use a trachy. In my case I wasn’t tolerating intubation so a few days after my op (I was intubated before then) I was fitted with the trachy. It would have been done sooner if it hadn’t been for Christmas. I continued to remain on the trachy until after I came round.