To think my husband is gravely ill at the wrong time?

[MyOtherCarIsAPorsche]

Masses of confusion.

Husband spoke to GP yesterday morning and described his chest pain. He was advised to call an ambulance. My husband refused because he didn't think he needed one - thought he had chest infection or torn muscle.

He went to A&E - was sat in a corridor from 10.30am - he had ecg, x ray and blood test. He continued to sit on a chair in the corridor all day.

He was told he was waiting for blood test results. These came back at 6pm. Then he had to wait for a CT scan - then rushed to resus.

Dissected aorta from heart level to naval level.

I was called to be allowed to sit with him because I wasn't allowed to be in A&E. Was then told he was being blue lighted to another hospital an hour away for immediate surgery. I asked is this time critical? The answer was - yes life saving.

Paramedics arrived and told me to set off to this other hospital. There were three paramedics. One said 'I'm not taking him because I can't use that bit of kit, I'll lose my job if something goes wrong'. No advanced paramedics available and no doctor available to go in the transfer.

I was 15 min into the journey and then called back to the hospital.

No surgery.

Trying all day today to get him transferred. Nothing available.

He's critically ill.

I'm out of my mind with worry.

There's a saying about not being ill on the weekend. The standard of care is not the same. The 24hr cover appears to not exist.

I feel like we're being fobbed off with poor excuses big style.

Thinking of youOP. Please take care.

[quote MyOtherCarIsAPorsche]@olympicsrock

Yes - almost in Hull itself! 😉

A large dwelling where kings and queens live on high. (Cryptic clue - easy one.)

Not been able to visit for first 48 hrs, so I can go tomorrow.

My husband was saying that the consultant told him his aorta was split inside from top to bottom.

Blood pressure still on the high side.

My grandson (pictured below) had a 'fitting episode' just after 4pm today. It lasted possibly more than 10 minutes - possibly up-to 15 min. It was so long that I managed to video some of it as evidence. (Luckily my son had popped in to help with the children.) It was still happening when the paramedics arrived. He had another in hospital an hour ago and luckily the doctor witnessed it.

I'm at my daughter's house - just put her other two children to bed.

I'm .... I've no idea what I am. There's buzzing in my head. [/quote]
Ah I was going to comment earlier but I know where you mean I'm E.Y and he's in a good place there!

I try to not come on to AIBU during the week but I have not been able to stop thinking about you so let myself come back on!

I was glad to read your update. I feel a little like you are holding it together for everyone and I hope you get some time to yourself to get your equilibrium back soon. Take care xxx

Thinking of you and sending strengthening thoughts.

What a lot to deal with op, thinking of you x

What a lot to deal with OP, I really hope things improve soon.

Gosh, that must have been a shock! Good that the paramedics and docs were both able to witness the fit though, in my experience they tend to tell you that it's either febrile convulsions or that you don't know what a fit looks like, so how do you know it was a fit?

In my niece's case, her fits were not febrile convulsions but due to a growth in her brain blocking her flow of cerebro spinal fluid - eventually when they found it, it was removed successfully and she has had no problems afterwards.
Something to consider mentioning, maybe? I'm sure they'll do some kind of scan anyway, but if they don't, I'd definitely mention it as a possibility.

No update on when surgery might be scheduled for yet?

@ThumbWitchesAbroad

They've said it's not febrile - they're certain. He had a fit which was still happening when the paramedics were here, one about 7pm in the hospital - doctors saw that one, and another quite violent one at 5am which 4 doctors attended.

They discharged him Tuesday evening and are sending a letter for a clinic appointment for further investigations.

With hindsight my daughter is thinking that he's had quite a few during the night because all day Tuesday he was very sleepy throughout the day. He can sometimes have days like this. When she goes to get him for breakfast on a morning he's usually excited to see her and 'loud' - sometimes he's staring straight past her and lethargic and unresponsive and takes ages to 'come round' - then sleepy during the day.

My husband had a procedure to place stents/reinforcement into the aorta - his open surgery looks like quite a way off. We've no idea of the outcome of the team meeting. They have said that after he goes home he will be monitored closely for any changes in condition and surgery will be done when required.

What is worrying is that he's still in intensive care. They were saying that he would move 'down' a ward earlier in the week which hasn't happened yet. I went to see him last night and tonight and he seems worse by the day. They are changing from intravenous drugs to 'normal' tablet forms and they are trying to get a good level of pain relief and a level/consistent blood pressure. His blood pressure is still high for long periods of time - linked to pain?

He's hardly eaten since he's been in hospital - he's not remotely hungry, which is not like him at all. When he's forced himself to eat he has been sick.

He looked grey today which was a bit concerning. I asked if he wanted me to shave his face - he said he felt too ill. He hates being unshaven.

His scan is tomorrow. Now they are keeping him at least another week for a scan the following Thursday - this was a bit of a set back for us.

I rang today to ask for a meeting to see the consultant because my husband says he's not getting any answers to his questions. I was told I would be contacted with an appointment - this evening I actually saw the doctor across the way so I went and asked if he could speak to us. He said make an appointment. No appointment as yet.

I asked a nurse when he was likely to go to a ward and he said that it's better for me if he's in ICU because when he goes to a ward there's no visiting.

I feel like a mushroom - kept in the dark. Everyone seems so evasive. This makes my mind race.

With hindsight, when we were waiting for the ambulance transfer on Saturday he seemed better than he does now🤔

I hope you get answers soon, and your DH gets a bit better soon. I hope you can rest a little as the constant worry must be just awful.

Maybe the general anaesthetic is having an effect on him too. I know I was not interested in eating and just wanted to sleep for about a week after my op. It takes a while to come out of your system.

Hope he picks up soon. You and your family sound so lovely and supportive, all ready to rush around and help. I hope you can take some time to look after yourself too.

Keeping everything crossed for your husband and grandson op. Take care of yourself too, you're helping everyone, you sound amazing!

I've been keeping you in my thoughts OP and will infinite to do so xx

Been thinking about you OP.

Thinking of you and your husband OP. Hope you've been able to have a proper conversation with a doctor now.

Thinking of you and checking in. It’s really good that they are keeping him in ICU to very actively monitor his blood pressure and keep it tightly controlled . This is what will help stabilise the aorta.
He is probably really sleep deprived . Was it the vascular / cardiothoracic consultant who did not make time to speak to you? Ask your husbands nurse/ the ward clerk/ receptionist to make an appointment for you. I’m so sorry that you do not feel you are getting answers.

@olympicsrock

I managed to speak to someone in Prof. L's office. She said it was unlikely I would be able to speak to him but would maybe be able to speak with someone else and she would ring back - but hasn't yet. Maybe they'll ring tomorrow with an appointment.

He had a scan at 4pm and when I visited this evening we hadn't been told the results. If the scan is good he will be moved to a cardiac ward tomorrow and then there's no more visiting allowed.

He said his pain was under control and hopefully if he goes to the ward tomorrow he'll be walking around. He was sat in a chair for a while today which he said was good.

He's talking about all the things that he can do when he gets home. He's retiring for a start - his job is very physical. He wants to start using all the gym equipment that's never been touched in the garage and he wants to start cycling again. He's looking forward to the future.

I'm not on the same page yet.

Doesn't seem two minutes since it happened.

His food diet is fine. We've always eaten healthily within reason. He's not overweight. He's always been fit and active - I think that's why he's still alive. Slightly concerned about the three bottles of wine he gets through at the weekend (I don't drink alcohol - I'm possibly chocoholic).

It still feels like he's a bit of a ticking time bomb. About to erupt any second. I suppose as the days roll by I should start to get used to this feeling.

I'm starting to think that we should be making steps to get our children checked out - they've already been asking about it. My older daughter is already under a cardiac surgeon - there's a tilt table test that he ordered which was cancelled because of the pandemic. She gets crushing chest pain if ever she eats a large meal - I don't mean she piles her plate high with food, it's just a Sunday lunch type meal which can set her off. She has to really cut back her portion size and eat more smaller meals a day. She had lots of faints during these attacks before it was linked to just having eaten - since we know this happens she can control her 'episodes' quite well.

Rambling ....

I had 3 hrs sleep today, not really refreshing, I was sat upright. I nodded off binge watching Ozark. Woke up just in time for visiting.

I'll shut up now.

I'm so glad that he was able to move to a chair from his bed today. That's such great progress!
If he moves to the cardiac ward, would he be able to video call you?

Hi OP, how are you today? I hope everything continues to be positive and that you managed some sleep. How's your grandson?

Thinking of you, your DH and the rest of the family, OP xx

It's just reality. Only he can change this.

He is an adult. Sounds like you now want to let him make his own choices - good or bad. And equally, you get to have your boundaries on what you can live with and still be well and be yourself.

Then you make choices that keep your boundaries. Not rules for him. He can choose his own way as an adult. We all want to make our own choices.

But you get to make your choices too. Looking after yourself is not selfish. It's what you desperately want him to do for himself too.

Model being a well adult. He might see that and decide to make his own changes. Or he might use it for more resentment and self pity. You can't control that.

But you can control your choices and as you're saying, jumping into a raging river after a drowning man who is refusing all ropes and floats isn't the answer.

My husband is home.

He was sent to ward last night. He was looking forward to being able to lie on his side and have a good sleep because a lot of equipment had been removed. (He had about 3 leads on his chest and one cannula left in.) He said it was absolute bedlam. (Just patients being loud and demanding and shouty.) He walked out of the ward at 4am and went and sat in a waiting area.

This morning he asked to go home or he would discharge himself.

A physio walked him around the ward and his blood pressure was still good.

He still has a little bit of pain in his chest - the worst pain in his shoulder and back has gone.

His drugs to bring home came to the ward at 6.30 pm and he rang to say pick him up.

He goes back for a scan and blood test next Thursday (CRP is raised). Then another blood test with GP the following week. Then scans every three months.

I'm fuming that he came home.

He's said he's allowed to walk but not pull, push, strain or lift. He looked worse after being home for 15 min so he's gone to bed.

The doctor said that ideally he needs to be off work until his second scan - just over three months away. I can't see him doing that either.

My daughter doesn't know if her son has had another fit. She hasn't witnessed one but thinks they've happened in the night previously. Her sister gave her an Owlette sock which monitors vital signs overnight. It went off at 3am last night and she flew to his room but the sock had just come off. She has been told to look out for 'absences' but has always thought he's absent frequently.

She had told the physio, about her suspicions of fitting, who had told her to mention this to the GP but before that appointment he was rushed to the hospital in the ambulance and is now waiting for an outpatient appointment. My daughter had a zoom meeting with her son's consultant when he was 3 months old (1 month adjusted) and said that he had no muscle tone - the physio only started about a month ago. The physio has been to her house about 4 times to assess his hypotonia and do exercises to help him balance/strengthen muscles. The physio ordered him a helmet to use at home and nursery as he still throws himself forward and backwards when he's sitting (didn't sit until 13 months). Helmet arrived today and it's far too small, 6-9 months - he's 16 months. He was born at 32 wks because mum had covid at 30 wks and she was quite poorly. So technically he is 14 months old (adjusted). I think that we know now that he has epilepsy - the last witnessed fit in hospital left him with lots of little cuts in his mouth which are still sore - the doctor said he was 'chewing' - apparently common with fits.

I usually have all the grandchildren around on Saturday - I've had to cancel. My husband also says he doesn't want company on Sunday - we usually do a large lunch for everyone.

Back to normal for me on Monday then. I'm behind with work - I work from home on an evening. Hopefully, I can catch up next week but means doubling my hours.

I'm almost finished watching Ozark so will just watch one more episode before I treat myself to an early night.

What a couple of weeks you've had.

I can understand why you're cross with your husband, but equally I remember when my dad was in hospital for a prolonged period a few years ago...unfortunately there was a man with severe dementia on his ward which manifested as sundowning and very loud, inappropriate behaviour towards the female staff. My poor dad found it incredibly distressing and repeatedly said he would never be admitted to hospital again once he got out.

I hope he takes the doctor's advice...I'm really surprised at the timescales you've mentioned. Would getting a second opinion privately be an option?

Hope your little grandson is more stable ASAP.

My sister in law has said the same about time scales.

She said that this should've been subject to further surgery. She wants us to get a second opinion from a specialist she knows in Poland.

I know my husband won't go for that.

He's happy with his treatment and is relieved he is at home.

Can't shake the feeling about the 'ticking time bomb'. I'm more than uneasy.

Last Saturday we were talking about being an old couple, holding hands, eating ice creams at the seaside, sat watching the world go by. We have talked about this from being very young. We married when I was 20 and he was 24. We certainly thought he was on borrowed time at that point because of the delay in the hospital transfer.

We talked about all the things we would do with a second chance. That's by the wayside now - I'm worried things will go back to how they were and we just plod on until something bursts.

Now he feels too young to retire and he's planning on attending to his emails in the morning (self employed).

An hour's drive home is a long time to fill and he told me I was nagging already when I suggested he laid off the drink this first weekend home.

I'll have to just run with his fatalistic approach.

Whilst he's on a cocktail of drugs to dull his pain, slow his heart, lower his blood pressure and protect his stomach - my heart continues to beat out of my chest. Is there any wonder I can't sleep?

Pretty sure he should not be drinking... Is he an alcoholic?

OP, read the PILs, patient information leaflets, that are in those boxes of tablets etc.
pretty sure some of them will say not to drink alcohol while taking those medications. it could be risky.
your husband sounds very trying.
and you sound exhausted, mentally as well as physically, naturally enough.
could you perhaps write him a letter; saying how you would really like to be able to sit doing nothing looking out to sea, with an ice cream. and that you really want to do that with him. it wouldn't be the same without him. and just how you feel.
good luck.