Can't believe I might lose my lovely mum

[bloomingheather]

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.

[Lizzt2007]

Sending you a handhold op, what an awful situation to find yourself in x x

[CeciledeVolangesdeNouveau]

Sending you all the hugs OP. If it helps to know this, my grandad who was 80 and has been a lifelong heavy drinker and was also obese at the time, has had sepsis no fewer than three times in a row and survived it, so don’t quite lose hope yet? We kept being escorted to the relatives room and then were granted whatever the NHS funding for imminent end of life care, but he walked out of the nursing home and has only just gone back in six years later. Definitely make the most of your time together, not least because it might help her, but don’t despair quite yet, she’s in the best possible place in her condition. I can’t imagine what you must be feeling, particularly as this is the family time of year. Don’t be afraid to lean on the support of nurses, chaplains and real-life friends as well. Even if she’s not conscious, it might be nice to go and share some Christmas memories with her in hospital? Or at least comforting for both of you.

All my sympathy. There aren’t really words that can make up for this situation, I’m sorry xx

[bloomingheather]

Thank you so much @Lizzt2007 @CeciledeVolangesdeNouveau The hugs and handhold are much appreciated. It makes it feel extra sad that it's happening at this time of year. My biggest fear was to lose her early. I usually love Christmas and so does she. Her and my dad were supposed to be coming to our house on Christmas day.

I've been in to see her almost every second day (sharing with my sibling) along with some other close family members. We've taken in cards and little things from her grandkids and I sat with her yesterday and held her hand and fixed her hair (the nurses had washed it and it was lovely and clean but not the way she would have liked it and she would have been annoyed if I had left it that way!). She had another scan today and we don't know the results yet but the consultants have told us that they are concerned that even if she survives, she might not have a good quality of life. Sometimes the things different consultants say vary and you find yourself feeling a bit more hopeful but I don't know if it's all futile now.

[WhichOneGoes]

I'm so sorry that you are all going through this. I really hope your Mum gets better. 75 is still young. 😢. It's good that you can share visits with your sister.

[floofyhouse]

I am so sorry to hear this OP. I can understand your shock and fear. I went through similar with my very active 79 year old mum this summer, who suffered complications from a routine procedure and ended up with sepsis and a perforated bowel. Like your mum, she cares for my older Dad and is very much the centre of our family. I do hope your mum rallies - we were told 3 times in the summer that the end might be imminent but my mum did come back from the brink. Sending you a virtual handhold and hoping that you get some more time with your lovely mum.

[CeciledeVolangesdeNouveau]

You sound like a lovely daughter with a lovely relationship with your mum. I agree about the consultants, I’m in hospital frequently and as soon as one has told you what the plan for your treatment is a new one comes on shift and it’s a completely new plan next shift, and things like sepsis can change either for better or worse quickly. I don’t know if this helps or is tremendously insensitive, but there are three possible alternatives: your mother gets some more years of life and recovers most of the former quality, she’ll survive and probably appreciate the remaining time with you even if she has health problems, or she won’t and at least she’ll be out of pain. I know that last one doesn’t lessen your pain and I’m sorry for that. Grief is so hard.

[bloomingheather]

Oh i'm sorry @floofyhouse - it's awful, especially when we were expecting it to be a fairly routine thing although admittedly major surgery. How is your mum now? Was she in intensive care?
Thank you @WhichOneGoes - it does still seem so young. Being able to share visits really helps - it's such a long way to travel and it's terrifying going in there, not knowing what to expect, although I obviously want to see her.

[whyamiawakestill]

Sending hugs, I hope she can rally for you, so worrying I've been in almost your exact position so I know the consultants mean well but I had to really start advocating for clear outcomes. I felt I was being fobbed off when dad was in a similar situation after surgery.

[BorrowersAreVermin]

Sorry to hear this OP. Thinking about you and your mum.

[Emelene]

Sending you hugs and prayers. Your love for your Mum shines through. Be kind to yourself xxx

[bloomingheather]

@CeciledeVolangesdeNouveau That really does help - not insensitive at all. We can see she is obviously not well and I don't want her to suffer so part of me thinks if she is out of pain it might be kinder, it's just all the what if's. And yes to the different consultants and lack of clarity @whyamiawakestill - they told me on Sat that she is not a candidate for more surgery and that she is not well enough for CPR but then the next day, we had a more positive consultant tell us they were going to try everything they could (medically anyway). I suppose it's to be expected but some of them are not the best communicators and I feel that they are taking ages to get to the point. The nurses are sometimes a bit more positive.

[DyslexicPoster]

Hugs and handhold from me. I agree with the consultants seemly conflicting views. If ones about when you or sibling are there, try asking them directly. But don't take too much as gospel. They won't know anything for certain either.

[betterangels]

This sounds so incredibly tough. I'm so sorry you're going through it, and I really hope your mother's condition improves.

[whyamiawakestill]

I don't want to consultant bash, they are all amazing people doing their best, but for us as the complications were directly linked to surgery we felt they weren't giving us the full picture, hindsight is great but I wish I'd been a bit more "me" asked for some straight talking what's the outcome question.

Its a very confusing time and so stressful you have all my understanding, try to sleep I know it's hard we had 3 weeks and I bought some sleeping tablets to help as I was exhausted and getting very run down, be kind to yourself, sleep and eat well x

[Amybelle88]

Never lose hope, and never feel silly for holding on to it.

Your mum is my prayer for tonight - and I genuinely mean that. I sincerely hope she gets better. Sending you so much love xx

[bloomingheather]

Thank you so much @Amybelle88 - I really appreciate that 💛I would hate to think mum would think we had given up hope.
Oh not at all @whyamiawakestill - mum has had great care and they are all doing their best. My db's partner is a medic so she has been great at advocating for us and asking difficult questions but when I'm on my own, it's not always the same.

[bloomingheather]

Oh and I have not been looking after myself well enough - completely lost my appetite and feel sick a lot of the time. It is hard to eat sometimes and I dread going to bed incase I get a phonecall in the middle of the night (either from the hospital or my dad!).

[Findingmypurposeinlife]

My late mother was in hospital many years ago. I was on my own and naturally breaking down when I was told she may not survive the night.
I knew my mother was psychologically very strong but I also knew she was very frightened.
A nurse saw I was distraught and very frankly told me to be strong in front of my mother and not let her see or feel my own distress. She was gravely ill but pulled through in the end, against the odds.

Stay strong and positive for your mother when you are with her. I know it is hard but please do it. Don't show her your fears. (And remember, facial expressions can give so much away too)
Smile with her, talk confidently about things she loves doing, even the small things. This can ecourage her to think beyond the hospital setting.

Just as you listen for reassurance and positivity from consultants and nurses, your mother will need that from you too.

Can/has your father visited?

Don't give up hope. Sending you a handhold 🤍

[bloomingheather]

Thanks @Findingmypurposeinlife Mum is unconscious on a ventilator at the moment although we are very aware that she can probably hear us on some level so stay as positive as we can and update her on how everyone is. My dad has been in a few times with me to see her although we have noticed that he is much more confused afterwards- I think the shock of seeing her so unwell is making him worse although he obviously wants to see her. He went wandering after the last time we visited and we found him in the wrong visitor’s room!

[bloomingheather]

In a slight turn of events today, the nurse who updated my brother this morning was not hopeful at all that things were going to get better for mum and that they were reaching the limit of what they could do for her although told us to wait to hear from her surgeon later on today after they had had a meeting.
The surgeon called and explained that they want to take her to theatre tomorrow to reposition her central line (it was replaced yesterday and popped out of position) and fix her wound. He feels she deserves one more chance and the fact that she was well before the surgery and had coped well with it initially were positives - it’s the auto immune HIT response to the Heparin that has caused her to be so critically ill now. So we are in limbo again with a shred of hope. It really is a rollercoaster!

[junebirthdaygirl]

That is all so difficult. My dad went in to have a bypass as they said he was an excellent candidate/ fit/ didn't drink or smoke etc. Said it was 99% success rate and would give him another 10 years. The operation seemed to go fine but then unexpected things started to go wrong. We were devastated. We couldn't come to terms with our hopeful start only for it to go badly wrong. It's heartbreaking and then you are caught wanting her to come through but not wanting her to be in a very bad state for her sake..and your Dad's. Its not unusual for a spouse to seem much worse cognitively as he has been depending on your mum a lot and now is cast ashore..poor man.
My thoughts are with you.

[DingDongMerrilyWithPie]

I'm so sorry Blooming - I'll hold your Mum in my thoughts xx

[bloomingheather]

Oh I'm so sorry that happened to your dad @junebirthdaygirl It's awful. And that's exactly our dilemma - desperately wanting her to survive but not at the expense of her longer term quality of life, especially as my dad depends on her so much. She has always been adamant that she wouldn't want to be dependent on us for care. My dad is so lost.

[Findingmypurposeinlife]

@bloomingheather I know this is such a difficult time for your family. Please know that we are all supporting your mum in our prayers. I know this is tough on your poor dad too, bless him.
I'm so glad you have a surgeon who believes in your mum's strength and is taking immediate action.
It's abundantly clear that your mum is surrounded by love.
As hard as it may be, please try and get some rest and please keep those positive thoughts in your mind. Be good to yourself and let others be good to you too and I hope you are surrounded by people and positivity, that are good for your spirit. 🤍

[herbygarden]

Here virtually holding your hand. I am so glad the surgeon is not giving up. I can't imagine how torturous this is but I will be thinking of you and hoping things go well tomorrow Xxx