Anyone know anything about this? - British Heart Fou...

British Heart Foundation

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Anyone know anything about this?

38 Replies

He's bright enough but tired. They took the cuff down but he only last 30 seconds, where before it came out he was up to 20 minutes. His confidence has gone. Dr came and said don't lower cuff again today, he has another infection, so needs antibiotics and meds to sort BP again as infection interferes with BP. They're starting antibiotics now and will try with cuff again tomorrow.

I'm just wondering now, what happens if they can't wean him off the tracheotomy. I've read that they can gradually change the tube for smaller ones, but they've already ruled that out last week as his neck is too short apparently. Will he be in hospital for ever?

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38 Replies
BeKind28- profile image
BeKind28-

Hello :-)

I am glad to hear he is bright enough but he is going to be tired he is fighting of another infection

Have they told you why they feel he is getting so many infections ?

His confidence will be shattered but in time will improve

As to your question I don't have the answer others I hope will but they will come up with something I am sure they will and no he will not be in their forever

Try and enjoy Mothers Day as much as you can with your Son you deserve it

One day at a time and lets hope there is improvement next week once these antibiotics start working :-)

Happy Mothers Day :-) x

in reply toBeKind28-

Think the infection is the same one not completely gone before they stop antibiotics. Plus as he's not coughing up and having to have secretions suctioned it's not clearing.

BeKind28- profile image
BeKind28- in reply to

Hello :-)

Yes I see that makes sense and answers why even when you are not as poorly as he is sometimes it takes a couple of courses of antibiotics to clear an infection up :-) x

Elsabounre profile image
Elsabounre in reply toBeKind28-

Did I miss him coming off the ventilator??..that can cause infections..if someone has been on it for a while..and the tracheotomy is the next step..it is an opening and so can easily be infected...am so sad that he has another fight on bis hands..and needs more antibiotics..hopefully when this clears up they can remove the tube/cuff as well and he can really start to heal...these times are very tough for you both..and I pray that he will heal completely and this will be just a story that happened as part of his journey...God bless you both.

BeKind28- profile image
BeKind28- in reply toElsabounre

:-) x

Cat04 profile image
Cat04

Sorry to hear today's news but I'm sure the doctors have a plan for his tracheotomy, he can't be only one they have experience of in this situation.

He will be tired fighting the infection again but hopefully the antibiotics will soon work their magic and improve his chest.

Try to have a nice time being spoilt by your son today, hubby is being taken care of in the best possible place and he's just doing it all at his own speed. Hugs xx

Purpled profile image
Purpled

if I remember right when my sister-in-law was having this problem it was because she kept getting infections and doc says because secretions were so thick they had to keep stop trying with the cuff because it was too much stress on her upper airways. She did eventually have it removed but not too long before she came home. Have the icu consultants walked you through the possible steps of this to put your mind at rest.

in reply toPurpled

No, I asked but basically told how long is a piece of string

in reply toPurpled

I'll ask again tomorrow

weepip profile image
weepip

im so sorry that the news isnt great again today . he will still be very anxious about it all after the other evening and that with the infection is bound to affect everything. Im sure the dr has a plan even if its a very fluid one and will have dealt with it before. It must all be very stressful for you and i hope that tomorrow will bring better news .Take care of yourselfxxx

Digger0 profile image
Digger0

He will be tired due to the infection. Also his confidence will have taken a severe dip when his trachy fell out. I hope you had a good day today with your son.

sturon profile image
sturon

Hi. I have been following your story over the last few days. It sounded as if he was really making progress so don't see this latest infection as a set back just a temporary thing to over come. I am sure the team caring for him know exactly what the plan is.

To answer you question 'will he be in hospital forever'. You may find this site helpful. Should he need the tracheostomy for a longer period the staff can train you in its care and he can go home eventually with the tracheostomy in if it is needed.

totalcommunitycare.co.uk/tr...

We all appreciate your updates and we are all thinking about you and sending our very best wishes.

in reply tosturon

Omg I couldn't do or cope with that 🥺😨

sturon profile image
sturon in reply to

I know it sounds scary. The community team would always be there to support you. I faced a similar problem with my hubby and the community physio and nursing team were a real support. Lets hope they can get the tracheostomy out once the infection is sorted.

fairyfeathers profile image
fairyfeathers

hello, so sorry that hubby is having issues clearing the infection. I suffer with bronchiectasis and often need two lots of antibiotics to clear an infection because my mucus gets very thick and the first course of antibiotics are just not quite enough to get rid of the naughty bugs. He will be very tired as his body is working hard to get better. Sending gentle hugs to you both xx

Callie456 profile image
Callie456

Sorry to hear there's a bit of a setback, remember it's often 2 steps forward and 1 step back on the path to recovery. My mum always needed more than 1 course of antibiotics to clear infections. It certainly can be disheartening to see things going backwards a bit, but it'll improve again. These rotten infections can take time to get rid of.Although he still needs the trachy now, it doesn't mean he always will and if he's ready to go home otherwise, having a trachy won't keep him in hospital. Many people have a trachy for different reasons and it can be temporary, even if it's a longer temporary than you expected. They will keep trying and hopefully he'll be able to have it removed soon.

I know it sounds daunting if he were to have it longer term, or at home and it is not what you want. But if it happens that way, there will be medical support for you and you will learn to manage with it, even though it sounds impossible now.

Praying for you and hubby 🙏

Seal59 profile image
Seal59

I have no advice but I hope things improve with the antibiotics x

Traveldreams profile image
Traveldreams

oh no, this will have hit both of you hard. As I’ve said to you before, my Dad had so many setbacks. We had phone calls to say goodbye but thankfully he pulled through but your stress level will be inconceivable to most people. I don’t have any experience of tracheotomy but it must be a common issue in a specialist hospital. Remember that in a few months time this will all seem like a very distant memory and you will be the experienced advice giver. Don’t look too far ahead. Deal with today, what will you eat for lunch? Can you reminisce or read something to give him hope? What plans do you have for when he gets better? Dad was aiming to get back to his greenhouses and garden. I’m aiming for a holiday. We’re not feeling your worry in the same way but we are willing you both to get through this. Sending much love. Xx

in reply toTraveldreams

Thank you. Looking forward to sitting in the garden in warmer, drier weather x

Traveldreams profile image
Traveldreams in reply to

Me too, hopefully having had the all clear and enjoying a glass of red for the first time in 18 months xx

devonian186 profile image
devonian186 in reply to

After my quadruple by pass I found I needed a variety of seats in various locations as what was comfortable in the morning might be less so in the afternoon.

I am not sure about your car situation, but I found the best sitting place was IN the car. It had radio, CD, A good view with lots of light, adjustable seats!

If you do have a car that is in a suitable place, after so many weeks it might be useful to ensure the battery is charged. I don't think you drive but can someone take it out for a run?

in reply todevonian186

We don't have our own transport, neither of us drive x

devonian186 profile image
devonian186 in reply to

That removes a lot of potential complications! Hope you have a nice comfortable chair for him in a sheltered part of the garden.

BlueGreenPink profile image
BlueGreenPink

I would agree with everything that everyone has said. One course of antibiotics never seems to work for my husband. Also, I found reading (something light) helped both of us while he was in hospital. It’s a different focus and a great distraction. Sending hugs x

in reply toBlueGreenPink

He has his kindle, and TV is free in cicu

Wooodsie profile image
Wooodsie

Oh dear Castleview, sounds like a massive backwards step, I am sorry 😔. I hope it doesn't mean his staying in hospital forever. When my step father was in ICU though, they did say for every week he was in there, he would need two weeks on the ward. This is a rough guide though and may not be true for everyone. Let's hope he gets out of ICU and they can move home closer home 🤞🤞 x

in reply toWooodsie

He's been in hospital 8 weeks!

Wooodsie profile image
Wooodsie in reply to

That's a long haul S. It really does take it out of you being in there. What with all the tubes, the masks, the oxygen and everything else. I assume he has one to one nursing? Perhaps a chat with his designated nurse could give you some proper insight. Doctors aren't always the best communicators x

in reply toWooodsie

It is one to one, but a different one every day. Some are really good at explaining, some not so good and a couple I can't understand.

Bingo88 profile image
Bingo88

Oh dear its such a worry for you. I think the main thing is to try and get on top of this infection again and then get things back to a stable condition and he can start to recover again. Take care. Brian

Wooodsie profile image
Wooodsie

That's exasperating 🤷‍♂️.

JeremiahObadiah profile image
JeremiahObadiah

Oh I’m sorry to hear there is this set back. Take heart, think of this as a bump in the road not a diversion.

Many best wishes x

WeeHoolet profile image
WeeHoolet

Thinking of you, and wishing hubby an easier time once his infection is cleared up. Keep up your questions with hubby's team, even though some staff members may seem less helpful than others. Getting your concerns recognised and addressed is important for both of you.

Glad to hear that hubby is bright enough. That's quite remarkable considering what he's going through.

God bless xx

pauljusa profile image
pauljusa

No advice but thinking of you both. You've been a tremendous support and advocate for your hubby and things have improved in spite of this setback. If good wishes can help, you have them from me and all your followers.

devonian186 profile image
devonian186

I know there are setbacks, but he is in a far better medical condition than he was a week or two back. Sometimes its 2 steps forward and one step back, but he is in the best place and will eventually get rid of the infections.

It would be useful to get some insight, perhaps via a quiet word from one of the nurses, as to what the plan is to get your husband up and about and how further infections can be avoided. Doctors are not always the best at communication in layman's terms.

Holidayescape profile image
Holidayescape

Sorry to read this. I hope you get better news today.

Nannysue1 profile image
Nannysue1

No surprises that you're both so tired. Him because hes had to put up a real fight and is now tired and probably despondent. You because of the worry and it's both frightening and tiring just watching a loved one going through something like this. The trick for bith of you now is to dig deep and come back fighting. It would be sad now if either of you stopped giving your all.

Thinking of you both. Sue

cappachina profile image
cappachina

So sorry to hear its a step back again but infections are nasty little things that keep popping up I am sure a second lot of antibiotics will kick them into touch and he will start to improve again Will be praying for you both

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