Hopefully getting better

[Debooorah1985]

Dear all

As most of you know my story, my dad is getting better.

Yet, I would like your experience or opinion on the following:

He is still on a vent, though breathing spontaneously on minimum settings for over more than two weeks now. He has got a tracheo. He is fully awake and very aware of what is going on, communicating with us very well though he cannot speak because of the tracheo.

He is feelig very down, which is normal as his muscles have wasted away and can't move, but sometimes he doesn't want to cooperate. He feels as if he isn't going to survive and he's very 'whatever'.

I don't want him to 'give up' or feel this bad as we (the family) all know how far he has come already.

What are signs that he will be ready to come off this vent and of the tracheo? How long can it take after nearly two months of induced coma? Is he just getting stronger or is there still a possibility he won't come off the vent set on a spontaneous breathing mode? He tries to cough but has a hard time swallowing; those muscles have also become very weak and need training.

I guess I am not really sure what to look for right now in terms of progress. He has fysio, sits up daily for about half an hour but still has ups and downs doing that. Is that normal?

Thank you.

Deborah

[jojokarak]

I couldn't comment really as I was the one in coma and the one needing physio once it was possible.   You really need to speak to the medical team who are taking care of your father 

[Luckyone]

Hi Debooorah,

Sometimes it must feel like progress is very slow, I know so well what it feels like to have 2 months missing from your life, locked in the very different world of an induced coma, I had been intubated for 19 days as I was to critical until then to have a tracheotomy, which I then had for over 2 month, unable to speak, my mouth feeling so dry I would have killed for a drink and thinking I would never leave.

It was quite sudden when the doctors decided I was ready to have the trachi removed, firstly they deflated the cuff but left the trachi in place to make sure I could cope, then a couple of days later the speech therapist came and done a swallow test where I had a drink and ate a banana, as that was successful the trachi was removed and I remember the nurses gathering around me to hear me speak for the first time since I was admitted nearly 3 months earlier, believe me that was such a relief to be able speak again as I found it so frustrating trying to communicate with my wife and family.

Recovering from it can be along process, trying to make sense of what happened to you can be very difficult so your dad may not seem the same person as before his illness so try to be understanding that he's been through a major trauma and will need time to adjust and rebuild his health and fitness.

Bill   

[Debooorah1985 in reply to Luckyone]

Thanks Bill 

[uthomas]

Hi Deborah,

thanks for updating us, it is always nice to hear how the story continued, especially in this case when things are getting better.

A word about his "whatever" situation: I was exactly the same the days after leaving the ICU. I later explained it the following way: I was putting the white flag of surrender up, leaving it to the universe to decide if I will survive. From talking with other people in the normal station later, I heard similar comments.

I think this comes due to the fact, that this is the actual low-point of the patient, as even though the time before are medically the worst, but due to the drugs one does not realise what is happening. Only when I was waking up I slowly realised I was in a bad state. It took me a while to also realise I am on the way to recovery. Another thing is that I was very weak, so you are more of an observer, which can be frustrating. It takes a while to slowly digest this.

Trust the doctors on looking at his vital stats in this phase, the body first brings up the internal essentials to a minimum before everything else.

Another thing is the recovery in general - things do not work linear, there will be more ups and downs and especially the first time the recovery is very slow (on the outside). It took me ages to get to minimal functionality. Sitting up was trained for a week before my feet touched the ground the first time. It took me another month to be able to visit the bathroom on my own. But once I was there the next phase felt super fast and in 3 months I was back to 80-90% of my former self.

Thomas