Headway
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At hospital now with Tony

So ever since we refused to pull his tubing and NOT allow for a organ donation as I said yesterday I feel like things have been some what different. Life for example when I came in yesterday his feeding machine was empty and ringing and no one seemed to care to change it, and yes maybe im being paranoid but I waited to see just how long and rather then them just replacing it the nurse waited till her shift was over for someone else to do it... I was bothered because it took about 40 mins. Also today I walk in and the machine is OFF again and I was concerned. Its not crowded or busy actually and his nurse said she was next door giving ice-cream and she has to order his food. I dont know Im not trying to be nit picky I just wish I could do stuff for him. Any how we are waiting for pharmacy to bring his food which has now been an hour.

Ok so while ive been here and researching I was wondering why the nurse told me he was getting a tracheostomy and peg on Monday because no one even asked us. So I decided to speak with the respiratory therapist who came in and I ASKED him how long can a person say on a vent he said 14 days. Tony has only been on for about 9 days now. So Im wondering is trach and peg necessary but if he really needs it of course I would like him to get it, also I asked about his breathing number on the vent which has been 20-23 and the guy told me it was a good breathe like u and me, so now im just lost. IF his breathing is fine and everything else except hes still in a coma why the trach im just scared thats all and wonder about the risk of surgery or infection. I dont know Im here nervous and just trying to be here for him. Thanks for all the support anyway you guys mean a lot to me. I will go to see my nana after and stay over her hospital and then come back to see Tony for the day again

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Is there a PALS office in the hospital> If so go in and chat to them, they should be able to explain lots of things to you and give you any help you need.

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OK I WILL look into tht thanks

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Hi

It was 15 days, 2 days ago that my close friend Amanda had her tracheostomy fitted and is still on 100% oxygen/air from her vent, so what the respiratory therapist has told you is correct and so even I can't understand why your fiances nurse has told you that he'll be getting a tracheostomy and PEG on Monday as well. Sorry don't know much about breathing numbers on vent.

Amanda has benefited from having her tracheostomy fitted 2 days ago because it is getting more oxygen/air into her.

Also if you're not happy with his care/treatment then I would put in a complaint because that what I would do.

Hope I have been of some help to you.

I will still think of you, Tony and family in my prayers and thoughts 24/7 and still send all my love and hugs to you all.

Lauraxxxx

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yES yOU have because it was confusing. Thanks alot for the help tho

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Thank you, glad I could help you

Lauraxxxx

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I think the "breathing number" you refer to is the peak inspiratory pressure which should be less than 35cm water, It reflects the amount of airway resistance, so his reading is fine

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yES THANKS sorry for the non doctor terms

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Hello, has anyone spoken to you about why he is having the trachy and PEG. The PEG is so he can have the feed he is getting on a longer term basis. The feed is run for 20 hours, even with nasogastric tube. So there is a 4hour rest period. I don't know why the delays etc asI am not there, but breaks do happen. The trachy is so there is easy access to clear chest secretions if/as he is unable to clear them himself. Once he is able to manage his own airway then the trachy will be removed after some work around around building strength in his chest. It sounds as though they are looking at his next stage of how to manage his physical needs. This is quite usual. I guess this is still early days after what happened. If the thought is that Tony is going to need respiratory support for longer then this is way ventilation tends to go. This is what I think might be happening. Tony is being cared for by highly experienced ITU staff who manage the machines and the patients therein. I guess for you it all feels a massive why and if, and What is happening now. Are you his next of kin? See if there is a chance to speak with the docs to talk things through, or the nurses looking after him. Oh bless you XXX🤗

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No just his fiancé but I have been keeping up everything (information and prognosis) with his father who is next of kin. I understand the from the medical standpoint why I just have noticed they rush things alot like wanting to basically end his life a few days ago and we said no so I just want to make sure thats all. Thanks

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You have certainly been rollercoaster-ing. Well done for not letting go and not giving up. I see there has been some improvement in that he has been moving his limbs. I hope this is good news and continues to be so. Your Tony has one special in his corner.

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Id like to think so because he is special himself. He is my love and my heart so I am trying hard to do the best I can for his gain and ours we need to have our baby and get married. Im just so upset I let us wait so long with engagement. Anyway yes I will not. THANKS FOR YOUR WORDS AND ADVICE MUCH

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Well I hope for you both that this will happen. I can tell from this all you said how much he means to you, and you to Tony, thus how much you love each other. I am rooting for you x

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Thanks so much x

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When your in hospital you can get drip feed information and it can get really confusioning and contradictory. You can ask for a meeting with the senior nurse in charge of his care to give you an overview. Ask for a quiet room so she is not distracted and can give you quality time. Prepare your questions before hand. She might have to gather information, so ask if you can book a second meeting once she as all the information. This is to help you to understand whats is happening. Not all the nurse will be up to spead with overall changes as they might be just looking at one issue that day as instructed.

Your role as advocate is extremely important. He sounds like a fighter.

Were all here for you.

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Yes You are right I have done this and waiting for the conference thanks

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Buenos Días ☀️

I had a tracheotomy and the scar sucks because people that I don’t know tend to judge me a little, but it was a vital step to keeping me alive.

When your heart aches and you’re living on your nerves/fear, time is no longer normal and way way way more noticeable. A minute used to just be this forgotten passage, but now that minute you are fully aware of and you don’t mean too, but that minute feels so important and like an hour.

I went through your exact mess myself with my dad so I really, genuinely understand.

My ex was my superhero. She spoke with the head of my Ward and organised a permission to take care of me more hands on everyday. She would do a lot of things herself because like you, she wasn’t satisfied with the attention hospital staff were giving me so if you’re there anyway with Tony - arrange a more hands on approach to you taking care of Tony.

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Yes there is a meeting scheduled finally thanks alot..Im sorry people are ignorant but yes it did keep you alive

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Good stuff ;) in preparation for the ‘meeting’ jot down a list of points you want to address because you’re so emotional right now you may get stuck on talking about something and derail a little from your agenda

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excellent you are getting involved and thinking about it all. This is major life event stuff. I pray that it works out well

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Yes I am thanks

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Hi HopeforTony. My partner had the vent tube down foe 5 weeks, but they don't normally like it to be in for so long. The team in icu wanted to withdraw treatment and this happened twice, but I refused and his family were behind me on that. What I do want to say is, all brain injuries are different. I was there every day and saw the small improvements which the staff didn't see, when they did the squeeze hand thing etc with him. I also had a HATS nurse, from Headway who I met there. Just talking to her helped me and also helped me understand what was going on. It may be worthwhile ringing the free helpline number and ask if there is a HATS nurse near you, but the helpline are amazing too. I also found it a great help writing a diary, I did this from day 1 until he came home, nearly a year, we now are doing one together, to help him with his memory. The trachy is not a bad thing and it doesn't mean its permanent, my partner also had a peg feed, straight into his stomach and he had it in for about 6 months but now is able to eat and drink fine, so had it removed. Hang on in they and speak to headway. I wish you both well x

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Oh ok yes I do write in the diary. Yes they dont see the improvements we do, thats is true. I am from the US so I will see if they still have the HATS around me thanks alot can he speak fine also?

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Yes he can speak ok and sorry, I didn't realise you are in the US hope they have something similar

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No sorry that was a typo he’s in the coma still can’t speak sorry yes I can email then I believe

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It is important you take care of yourself I realise you want to be there for your partner but your life is important to😩

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I know you are right I just got some rest. TY

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I had a tracheotomy (although, funnily enough, I don't remember that!). It has left quite a scar, but I always look at that and think "Look! I survived that!", so I am proud of my scar. If the medical people think he needs it, c'est la vie, if it might do him some good, then go with it.

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I am sorry for your trauma. Please stay picky because it is important for staff to be aware there is a person in Tony’s life who cares an will checking on the quality of their caregiving.

It has been a few years since my family members had vents and trachs, so I defer to others. Ask now about opportunities for rehab or longer term care settings or home if that is an option because earlier application may be an advantage. Peace and love

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Ok thanks I will ty

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I was unconscious for 3 months and my family were told I was going to die. I was in intensive care and I am told I had everything, obviously I cannot remember. So I mean it seriously stand up for you and your partner he needs your attitude, as you said you are with him and see things that medical staff have not got the time to do.

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Yes that’s the prognosis for him very poor. I am going to keep doing it ty

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My thoughts are with you. Please keep me updated. You are being very strong my husband was not he escaped and left. That was many years ago but now am able to a certain degree ,( never be good enough for me) he is divorcing me as I cannot forgive him for leaving me.

Sorry to be negative as a disabled person my thoughts and hope are with the two of you.

Best wishes and love to the two of you

Mufc

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I’m so sorry he’s was suppose to be there for you and wasn’t that’s horrible. It is a reality so I understand you expressing it. I will as of today the order has been put in for his trach. As u all know I’m terrified and just hope the surgery goes well. I hate to see him like this. I will be there today as I am everyday and see him out of surge y I am going to see my nan now then Tony. ty

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