Consultation with Patrik Hutzel and more

[HopeforTony]

So in an effort to do as much research and try and understand the ICU and Hospital protocols I have enlisted the help of Patrik Hutzel. I stared reading and watching his vides when my granmother spend a while in ICU and even before, just a few weeks ago so I am familiar. Is anyone else or has anyone else used him? I wanted to schedule a conference today- tomorrow specifically because the anestiologist called to say they were going to do Tonys tracheostomy and peg. I am not trying to stop them but just as they rushed me to end his life a few days ago I just want to make sure we need to do this now. And of course if its dire then by all means, Its just I am uneasy and want to make sure we are making the right decisions so I am hoping with Patriks help we are. That is the update I stayed with Tony all night slept at hospital and continued to see his leg and foot shake as I recorded with video. Anyway that is the update, I came home to check the cats and sleep about 3 hours I must get back to research and see my nan at her hospital then later then Tony. I realize because nurses are not there 24/7 they can miss little things that are important to us that show progression for our loved one, even if they are little so I AM PAYing extra close attention. TY all.

[Kirk5w7]

Hi, I had a tracheotomy and peg for feeding while i was in intensive care.

They enabled my care to be handled much better.

I dont remember when the tracheotomy was removed but it was removed as soon as it was safe to do do.

The peg was not removed until the dietician at the rehab centre was sure i was eating normally.

My care whilst in intensive care and afterwards on the the general ward was excellent, may i add that whilst i was in intensive care my husband was asked to put DNR on my notes should i suffer a heart attack, my prognosis at that point was not good, but he would not do it and it did not cone to that.

When i first showed signs of surfacing from the coma it was by putting my tongue out in response to questions, i could not squeeze anyones hand. It was my family who worked out i could do this not the medics, they were adamant i was not responding, the family proved them wrong. So,think outside the box, it stands to reason that if someone cannot move, asking them to squeeze a hand wont work.

May i also point out that i had uncontrollable tremors in one arm, this was caused by nerve damage and not necessarily a sign of coming out if a coma. However, any sign should be noted and worked with.

Janet x

[HopeforTony in reply to Kirk5w7]

Thanks so much this helps very much. I understand this, and I OWULD NOT LIMIT HIS CARE because I know its life sustaining just want to make sure doubly that its not being rushed. I do understand so thanks. How has your voice now and feeding now since after the surgery and how is your health now. Thanks Godspeed Janet

Oh yes I have realized his left hand has like tremors and I was wondering if this was in fact nerve damage and wondering if and what they can do for that also.

[Kirk5w7 in reply to HopeforTony]

Hi again, my voice was not damaged in any way and as soon as i was able to feed myself , feeding was and is ok.

I am 6 years into recovery now and by the time i left rehab, which i signed myself out of early because all i was getting was 20 months bs of physio 5 days a week. I seemed to come on quicker on my weekend visits hone. I wouldnt have signed myself out if i was still benefitting, i just felt someone else needed the bed more than i did.

They taught me to walk, feed myself, and care for myself again. Noone was allowed out until they had been taken to a supermarket to buy items to make a meal with and then made that meal in the kitchen by themselves.

I have recovered very well far better than was originally thought but it has been and still is hard work.

When i left the hospital for rehab doctors i did not know came to shake my hand and wish me well. When i meet consultants and doctors for the first time, if they have read my notes, they are surprised to see me walk in unaided and converse with them so well.

I will never be the person i was, i had to give up work and driving but i can get around independently now, although i do dislike public transport. My problems are mainly physical ones, my short term memory can be sketchy, but i work daily to work improve my strength, stamina and executive skills, and probably will have to for the foreseeable, im 65 now and approaching the danger point for Alzheimer’s.

Hang on in there, with you fighting his corner im hopeful for the best outcome for Tony. My family fought my corner for me and i will be eternally grateful.

Much love

Janet xx

[HopeforTony in reply to Kirk5w7]

Wow that’s amazing and a great recovery I wish you the best and I know no one is ever the same but I as Tony has been there for me I will do what I need to for him. This has made me want to be better so I can do more for him hopefully when he gets out tysm

[Kirk5w7]

It should have read 20 minutes of phsio 5 days a week.

[Hidden]

HopeforTony it's important that you make time for you or you are going to become ill yourself. Take it from one who knows.

I completely get that you want to spend as much time as possible with him. But he will need you more when he comes out of his coma.

Take care xxx

[HopeforTony in reply to Hidden]

Ok yes today I’m only going to go for 3 hours rather than 8+ everyday ok you’re right

[Hidden in reply to HopeforTony]

It's so tiring going to and fro from hospital. Then you don't sleep, can't eat because you are worrying about him x

[HopeforTony in reply to Hidden]

Yes I haven’t been able to eat actually and sleeping is hard too I am trying tho