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Can't believe I might lose my lovely mum

41 replies

bloomingheather · 22/12/2023 00:02

My mum had urgent but planned open heart surgery two weeks ago to repair an aneurysm and replace her aortic valve. She is 75 and was otherwise well with no obvious symptoms. We were all over worried about her but she got through the op seemingly successfully. I visited the next day and she was a bit confused but talking away and it was so nice to see her. She was still in ICU for the next few days and her kidneys had taken a hit (which can apparently happen with that surgery) but they started to get her up on her feet and sitting up in a chair.

Unfortunately since then, she has faced one complication after another - continued kidney failure and on dialysis, very high blood pressure, a chest infection, difficulties breathing and then it became clear she had had a rare allergic reaction to the blood thinner they routinely use (Heparin) which meant that instead of it thinning her blood, it created clots. We learned last week that she had a large clot in her aorta and were prepared for the worst. She seemed to rally a little in the day or two after and was fairly alert and chatty and we thought she might get better but her breathing deteriorated at the weekend and she was sedated and ventilated and has remained like this. There has been damage to her liver and they suspect sepsis (as a result of the HIT? This isn't completely clear). Apart from some very slight improvements in her bloods and liver function and slight reduction in her oxygen, she remains critically ill and we are getting to the point where they are running out of options.

My mum is everything to us - she was always out and about, has young grandchildren that she looked after every week (including my own wee one) and is the bedrock of our family. She was great company and we were in contact most days and she was a big emotional support to me especially. She also kept everything going for my dad (he is quite a bit older) and he is not coping at all without her. It has become clear that what we thought was a mild cognitive decline in him might be more than that and we are so worried about him too.

I can't believe we are here and that we will very likely lose her. It feels like a living nightmare and I veer from being in complete shock that we are here two weeks after I took her in to hospital seemingly fit and well, to feeling almost frozen in fear or feeling stupidly optimistic that maybe there is a slight chance she might start to recover. She is also in a hospital 60 miles away from us which makes it all seem even worse. I am devastated and just wanted to share with someone who doesn't know me for a bit of a virtual hand hold.

OP posts:
anx12345 · 02/01/2024 20:22

@bloomingheather how's your mum

bloomingheather · 03/01/2024 01:26

Thanks for asking @anx12345
Mum had her central line replaced in surgery just before Christmas and has hung on since then. She is still on a ventilator in intensive care although her oxygen has been reduced and infection markers are now normal. She doesn’t need blood pressure medication any more and the only one she need therapeutically is her anti-coagulation medicine. She had her lines replaced again today and has been responding to instructions and they are looking to move her to a hospital closer to home as she is no longer a cardio-thoracic patient really.
Overall, things are looking more positive although I am almost scared to say that as she still has the blood clot in her aorta as far as we know and she has been through so much - if she was to get another infection we have been told it would be catastrophic. She is not out of the woods yet but is in a better position than she was in a week ago.

OP posts:
TartanTerrier · 03/01/2024 04:37

That's good news, hope she continues to rally!

CeciledeVolangesdeNouveau · 03/01/2024 08:07

Merry Christmas to you and your mum, though it probably feels as far from that as it can get.
Her condition is serious but she’s actually doing well for the moment for someone in ITU, and one medication for someone in older age is incredible (I’m on eight and I’m 31 and last time I was in ITU I died twice, so please take some courage from that). Is she conscious? Keep talking to her anyway - worst case scenario is that she’s not hearing you and you’re sharing your love and dear memories, best case scenario is that she is.
Thinking of you both. You’re being brave - both of you.

anx12345 · 03/01/2024 11:40

@bloomingheather that's wonderful news thinking of you all

bloomingheather · 24/01/2024 12:56

Just thought I would leave an update on my mum. Since I last posted, she has been moved to a hospital much closer to home which was a lot easier for us all. Staff caring but communication not as good on the whole.
She's now off ventilator tube and has tracheostomy instead and doesn't need dialysis anymore although her kidneys are still not 100%. Last week we felt she was making good progress - she was fully awake, weaned off sedation and was beginning to get up in a chair and having longer periods of time off the ventilator. She was still delirious and although was trying to speak, was still not following everything and still seemed pretty confused a lot of the time. Her toes are also necrotic because of the blood clots related to the HIT reaction and her feet were all bandaged up.

We were starting to feel a bit hopeful that maybe things were heading in the right direction and she was making little bits of progress but unfortunately she now has another chest infection which started last week. She has been sleepier since the weekend and when I visited yesterday, was asleep but very unsettled. There was a very friendly young nurse looking after her who told me straight away that she has just qualified and that the dr would speak to me. She wouldn't answer any of my questions or respond to my comments about how mum was or how she seemed unsettled. I was asked to go into a separate room for a chat with the consultant (never a good sign!).

He told me that they are very worried about mum and that the infection has has been a setback. Reinforced that she has been in ICU for much longer than the 'average' patient (5 days on average apparently) and that it has been very hard on her body. So not a good outlook.

I was on my own (I always seem to be on my own when they decide to give these chats - the 'doom chat' I have named it) and was very upset. I am also annoyed at the way it was handled and the manner of the consultant - I felt he was quite officious and patronising - didn't ask my name, didn't even make eye contact with me when he came over to see nurse and ask if I could go into another room, had me sitting in room on my own waiting while he went to the toilet. I made a comment about her being delirious and asking to go home last week (i am under no illusion about her being able to get home) and he said "well, I don't think she'll get home". I know these are difficult conversations for them to have, I fully appreciate that but I almost felt that he was revelling in telling me how bad things were - it felt unnecessarily heavy handed. The nurse and dr then waited behind while I left the room rather than walking back with me - I then got lost (have no sense of direction and just wanted to get out of there) so the nurse took me back but the whole thing was horrible.

I then came home an had an argument with my husband as my son was still up and not ready for bed (thought he might have got him ready as even though it was my 'turn' to do bedtime he knew what had happened at the Hospital) so that didn't help!

OP posts:
WhichOneGoes · 24/01/2024 17:12

Sorry to hear you Mum is still so ill. I hope she feels better soon. 💐💐

mobogogi · 24/01/2024 17:17

Unfortunately drs do need to be quite careful about saying things in a "nice" way because it can be misconstrued. Experience shows that the best thing is to be frank, honest and state the the likely outcome rather than a hopeful best case. I'm sorry your mum is still so ill, time is needed for things to heal and it will seem like an age to you. Take care

bloomingheather · 24/01/2024 18:01

It’s not the content I was upset about really but the way it was delivered. I totally understand the need to be clear and honest - my brother’s spouse is a medic and I work in health myself. I felt the whole situation itself was handled poorly, especially quizzing me on what I already knew on the manner that he would quiz students in a viva - it only takes a look at the clinical notes to see the last update given to the family as is best practice I believe, or an explanation of what he believed we had last been told - I was a nervous wreck and very upset - not the time to start off by asking me to summarise how ill we all know she is. That’s his job!

OP posts:
BorrowersAreVermin · 24/01/2024 21:46

My mam was in ICU from Friday to Monday a couple of months back, she had a different consultant every day and I found their "bedside manner" left a lot to be desired. Only one of the four I would say treated her with any kind of compassion. Having to speak to us family seemed like an inconvenience to them.

Fingers crossed your mum can get past this chest infection OP🤞

Emelene · 28/01/2024 23:26

Thinking of you OP and your lovely Mum. Xx

howthefuckdidthathappen · 12/04/2024 15:28

How's are you / how is your mum now OP? X

bloomingheather · 12/04/2024 19:57

Thanks so much for asking @howthefuckdidthathappen
Well, it’s a long story! Mum is actually now almost recovered after over 4 months in hospital, 3 moves to different hospitals and two scares involving a perforated bowel a few weeks ago (which she was treated with antibiotics for) and a return of a fungal infection affecting her blood (again, didn’t develop into anything).
Her feet are necrotic and her mobility isn’t great but she is due to get home soon. We almost can’t believe we are here and that she is still with us. It’s been quite the journey….

Unfortunately, things with my poor dad didn’t improve - he got a diagnosis of dementia a few weeks ago and we had finally managed to get social work to agree to a 4 week respite stay for him last Friday after really concerning incidents where he tried to get into the neighbour’s house at 1am etc.
Last Sat am he was found at the bottom of the stairs inside the house, having fallen - he was rushed to hospital and unfortunately had sustained major trauma and was critically ill. He passed away in the early hours of Sunday. Thankfully he was in the same hospital as mum and she got to see him earlier the previous day. We are all devastated and still in shock. I think I have reached the stage where it feels like this is all happening to someone else and I am numb.

OP posts:
floofyhouse · 12/04/2024 20:20

I'm so sorry to read your update OP. Condolences on losing your Dad, how awful for you. I hope that you're able to get your Mum home soon as you hope, though it sounds like she's going to need quite a bit of support, so I imagine things are going to be hard. So sorry you are going through all this. Take care.

TartanTerrier · 12/04/2024 23:46

Gosh, that’s very sad. Your poor dad - and what a terrible shock for everyone. No wonder you feel numb.
Good to hear your mum is doing much better though. I hope she continues to get stronger.
Condolences 💐

howthefuckdidthathappen · 13/04/2024 09:58

@bloomingheather

Thank you for the update OP and I'm so sorry to hear about your dad. I realise I posted on here under a different username before hand but I followed all your updates on your lovely mum.

I really hope you're as okay as can be and you've got a light support around you. What an awful lot to go through over a few months. Take care op Flowers

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