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.

I've experienced something similar recently OP, combination of the drugs and fear I think. In spite of me doing everything for him, I got sworn at, the nurses however were absolutely wonderful. It's quite usual apparently, for some people to behave this way, but not something I'll forget any time soon.

All you can do is ride it out, the lovely him is in there somewhere. Good Luck.

All this sounds really horrible . He is being a see you next Tuesday. Sometimes during the operation , the brain is starved of oxygen and people experience personality changes but it does sound like he is being nasty. He is probably frightened too .

I know you don’t want to hear it but GP is not the right place to ask for help at the moment. He has had a massive operation under specialists , they know exactly what has gone on, have various microbiology results that Gp won’t have access to and may not diagnose problems that a vascular/ cardiothoracic surgeon who understands what he had been through would instantly spot.

This is why the other hospital diagnosed gastroenteritis instead of extended dissection but they didn’t recognise it . I did even from your posts because this is my specialty.
His team will want to know what is happening I promise you. Just give the ward sister a call to chat .

Big hug! Xx

Yes - he was lovely.

Now my grandson has just had a seizure. We've been told to phone for ambulance if more than 3 minutes in duration. And I didn't - I sort of knew it was important to get evidence. The consultant told us to video an entire episode and I'm on my own. I was conscious of ringing 999 and as I was videoing - time was passing. I thought he was coming out of it, stopped filming , then he went straight back in so I started filming - I have 7 min of video 😳

While he was sleeping (holding my foot 😬) I thought I could see him quivering. It's so slight - you have to really concentrate to see it. He then opened his eyes and was staring, unblinking, his fingers, hands, arms, legs occasionally twitching/jumping. This had gone on several min before I started filming. I have managed to capture him coming round.

I perhaps should've rung an ambulance but then who would pick granddaughter up from school and have remaining grandson? My husband used to pick granddaughter up from school all the time - they're very close. And now I'm thinking I could've rung my daughter after I rang for an ambulance - but I know she's working out of the locality today.

It happened in slow motion and really quickly at the same time.

His last witnessed fit was the day after his EEG. We think that they are mainly happening during the night. He can be very tired and grumpy some days - we now think this follows fits.

My daughter has rung the GP - they are ringing me back.

My grandson is quite subdued now - which is definitely not normal. I call him my little tyke - he's a little whirlwind of activity who never sits still. He's just 18 months - not walking, wearing his padded helmet while awake - he falls A LOT. Hopefully he'll sleep on the school run.

I'm on high alert alert for further fits. He has had 3 bad ones in a row before. I don't suppose my daughter will sleep tonight.

Don't suppose I will ....

Oh Lord , this is all you need. It never rains but it pours!
That sounds really stressful. Xx

Oh op...what a dreadful time you and your having xxx

Oh op...what a dreadful time you and your having xxx

So sorry Op. Its probably time to give yourself a break too, let someone else look after your grandson, particularly as he is ill. 😓

OP I hope you take this with the good intentions it’s meant, but you are doing too much. Right now, your daughter needs to find alternative childcare.

Just reread what you wrote - you were told to call an ambulance in this circumstance and you couldn’t because who would pick up another grandchild from school! To me, that reads that your family is stretched beyond its limits. Don’t be a martyr. It won’t help anybody in the long run.

I agree with this completely

You are clearly trying to hold your family together but it sounds like you are spinning too many plates

Something has to give

In a similar vein to 7eleven - take a step back OP and give yourself time to process what is going on for you at the moment .

Sometimes in a crisis it can be a coping mechanism to carry on regardless ,indeed digging deeper into the carrying on to remove oneself from events .

You sound as though you are in shock and running on fumes .

On Sunday olympics said
he is not capable of making the right decision for himself.

this means that YOU need to take decisions out of his hands. Phone his hospital team ( not the GP) for help today ( not tomorrow!!!) . They are a 24/7 service and will want to know. Tell them what is happening. They can make the decisions

Please try not to get overwhelmed by his current treatment of you.Even if he is capable of controlling it to some extent it doesn't negate the fact that it has arisen because of his health,and it doesn't mean that he has complete control.

Perhaps ,like any long relationship ,there are spaces between the two of you ,hurts and neglect that rankle more now and exhaustion makes hard to rise above .

Grit your teeth; ignore his insults ,phone the hospital against his wishes and reduce child care (however distracting and rewarding ) and give yourself some time to rest .

Poor wee man! I hope they get to the bottom of this. I think you did the right thing filming him, tbh. I took my DD2 to A&E (many years ago) and each time, she was perky and happy by the time we got there, hung around and were seen by doctors.
No wonder YOUR heart isn't in good working order, @MyOtherCarIsAPorsche .... How much can you take here? I kind of agree that you probably should step aside from babysitting until you're well, but I also think some time away from Grumpypants isn't a bad idea either.

@Fraaahnces

Doctor has rung both me and daughter about the fit - it's a focal seizure. I didn't get evidence of the quivering/shaking before he started the focal part.

He didn't eat lunch and slept for the best part of the afternoon. He appears fine now. From experience these episodes come in groups - so he could start again anytime. The GP saw the footage and is sending it on to the two consultants he has seen since Christmas.

I'm childminding again Wednesday, Thursday, Friday - this is for my younger daughter (expecting twins), she has a consultant appointment first thing in the morning so we will spend time this evening writing out lists of questions. She lives an hour away - funnily enough, she saw my husband's current cardiac consultant last year because of heart problems she was having - sinus tachycardia and something about a right bundle branch block (?) he said. She's had a fast heart rate all her life - GPs have all said anxiety which she's never believed to be true. Hopefully - she'll be thoroughly checked out now. I get up at 5.30am and set off at 6.30 - get home around 7pm when I go over there. It's a lovely 'poash' little town - I love window shopping (quite a few of higher end shops) and walking around the Minster.

My husband has been spending/shopping online today apparently - bought lots of sports clothes/trainers - because he's going to get exercising 'seriously' next week. 🙄

I'll tell you what love is - putting him on another pair of those hospital compression stockings and dabbling out his stinking old pair in the sink, after being out all day, until they are as white as they were when new.

Now to start dinner.

Video footage of the seizure will be really helpful for the consultants. But very important to call an ambulance if the seizure doesn't stop within a few minutes, as status epilepticus can be very dangerous. You can always call them off if the seizure resolves itself before they arrive.

There are wrist alarms that monitor blood oxygen, heart rate etc. and can help to detect focal seizures - might be useful if night time seizures are suspected. Not cheap though! www.epilepsy.org.uk/info/daily-life/safety-aids-equipment/alarms-monitors

If he ever has convulsive seizures (my son's seizures start as focal seizures, but progress to generalised convulsive seizures), there are bed monitors for that which are cheaper.

@avoidthecreakystair

All he has at the moment is an Owlet sock (he was premature - 32 wks gestation) which basically is heart rate, oxygen saturation and video monitor. She's (mum) keeping a record of all the dates that he's had a very high heart rate during the night. She's often 'alerted' to find him 'staring' and unmoving. He's usually then irritable the following day. We suspect it mainly happens with sleep 🤔 We also suspect that it's been happening for a long time.

He's not diagnosed. We have had no input/training on what to do. I know he's had two 'violent' fits observed in hospital.

We were unaware of anything medical equipment wise available which detects these things. Many thanks for the link. 🥰

It's all very worrying with regards to his future.

I have heard good things about the Owlet socks for wee ones!

Does your daughter have a video monitor in his room at all? We put a motion activated camera in my son's room which captured one of his early seizures, including the onset (really hard to catch that when you are recording manually!), and that was enough for the consultant to make an initial diagnosis. We didn't get a confirmed diagnosis and medication until 6 months after his first seizure though - not a quick process.

If your grandson has had seizures witnessed in hospital, they are likely well on the way to a diagnosis anyway.

70% of people with epilepsy become seizure free with medication (and there are other options for some of the remaining 30%). And some children with epilepsy outgrow it as they get older. So there is hope, if your grandson does get an epilepsy diagnosis.

Such a scary time though, and particularly when you already have so much on your plate.

@avoidthecreakystair

Yes - she has the video monitor in addition and connected with the Owlet App.

She's racing to his room frequently during the night. She then has to try to get back to sleep as she works. Some nights she's up checking 3-4 times.

Some night's she's got her daughter, who is also undergoing several diagnoses, crawling into bed with her which also leads to poor sleep.

I feel she has little quality of life - she's usually in bed at 8pm. She has a diagnosis of EDS (hypermobile) and is exhausted without having to be running up and down all night.

I feel so sorry for her - everything is so stressful at the moment. I feel like I'm wading through treacle (and that's just my legs). 🤣

You sound like such a loving, devoted grandma. Your daughters are very lucky to have you

@MyOtherCarIsAPorsche I’m only a couple of years younger than you. (50 this year.) Can you adopt me? You sound like the mum I dreamed of having!
I’m shaking my fist at the “whatever” for hurling so much at you and your family. It’s disproportionate to the positivity that it is evident to all of us that you bring into your family’s life. You are a true lynchpin.
Is DH being nicer? Polite at least? Maybe suggest that before he goes for a run, he could wash his own damn socks.

Has your grandson had his Vitamin B12 checked? People with EDS are very often low in B12 which means babies don't always get enough during pregnancy, and seizures can be a sign of B12 deficiency in young kids

@kingsleysbootlicker Some people in any patient group may be B12 deficient, but I think you're drastically overstating this. Such evidence as there is, is fairly low quality and mainly associated with generally poor nutrition. Please be careful in posting about EDS comorbids as this kind of thing contributes to the bad reputation that EDS patients have sadly acquired.

Just lost my reply! Try again...

OP I am more worried about YOU than anyone else in this scenario.

Your husband is behaving really badly. Your daughters need to find alternative childcare arrangements for now. I realise it's a coping mechanism but we all have a limit and it sounds to me you are at the wrong side of 'enough' .

Listen to what the medical professionals on here are telling you, please. And make a GP appointment for yourself!

Your devotion is incredible - but it really has gone beyond the admirable into truly dangerous territory where you risk wrecking your own health and wellbeing. However scary it is you need to slow down, rest and begin to process all this trauma.

I don't mean to sound unkind, truly I don't , but I feel so worried for you.

This - as much as you love and adore your grandchildren, your family are expecting far too much from you. It's quite concerning how much you are doing with your own health needs and those of your seriously sick husband.

I have 3 grandchildren, one with special needs,and there is no way I could provide full time childcare without it impacting my own health. You are headed for an early grave if you carry on like this.
Sorry, had to be said 😔

I’ve been following your journey but haven’t posted. I just want to echo what others have said…who’s looking after YOU in all of this?

You've got your hands full with your husband and on top of that you are providing extensive full on childcare! That is demanding and draining in itself and you’ve got the travelling to/from their house

sometimes enough is enough and you have to take a step back

please think of yourself too x

@MyOtherCarIsAPorsche just wanted to say I’m thinking of you. Hope things are a little better xx

@olympicsrock

I think that he's making a remarkable recovery. He got some antibiotics from the GP on Monday - his cough is much better. I don't know if that's a coincidence.

He had some back pain last night so took some stronger painkillers (was just having regular paracetamol). He's feeling hot today - he's opened windows throughout the house to make a draught and he's currently lying at the side of me on the recliner sofa asleep. He's wearing his surgical stockings and a pair of shorts.

He got my older daughter to take him into town today and he bought some trainers so he can start exercising next week. He bought lots of sports clothes last week as soon as he got home from hospital.

He's ordered an Australian type hat online (without corks) and that arrived today - he's going to wear that when he takes up fishing.

He's bought two reclining chairs for the garden - they are leather. He also bought rainproof covers for them.

I have never known him spend so much money before in my life - he is well known as a 'nip screw', which means very tight with money. It's very much like his personality is the opposite and I'm not sure if I like it.

He's been in the greenhouse planting seeds. He's walked to the park and back this afternoon (30 min round trip).

I came home from childminding at 7pm and he'd made stew and dumplings.

He likes being at home - he's a self employed gas engineer and he's always been a grafter. He's not returning to work - our son will have the company.

I actually have a day of rest tomorrow - not actually resting my brain - I've been behind with my job (wfh) lately, so I will be trying to catch up. But my feet will be up and my body will get a break.

It's beginning to sink in now - on the 25th/26th March when we couldn't get an ambulance transfer to the specialist hospital, I actually drove home planning a funeral. The consultant had lead me to believe that he needed time critical, lifesaving surgery and I thought he would die.

Since then, the consultant at the specialist hospital has said that, had they been aware of the EDS factor, he would have had immediate surgery. (I certainly did tell the first hospital of this connection and saw the consultant make a note of it.) This has made me realise how important it is to know your family medical history because it can seriously affect any future treatments. In the light of this - doctors are still extremely reluctant to diagnose people who have obvious symptoms of EDS - why is this? It can have potentially life saving implications. I'm sure that three of my grandchildren have EDS (their mother has a diagnosis) - but we can't get a diagnosis.

If we had known that my daughters had EDS in childhood they would've been entitled to extra help throughout school. They didn't receive support. I regret that. My younger daughter dropped out of college because she couldn't make notes fast enough during A level lessons - she can only grip a pen for a short amount of time. The GP recommended that the college allow her to use a laptop for note taking but the college wanted a consultant letter and a definitive diagnosis - in the end she dropped out of her studies and had to make way on another path (she was an A* student throughout High School). My older daughter has Autism, connected to EDS, this could have been supported - it wasn't. We think all her children are on the spectrum in some way. I feel that I've failed my family because I should've pushed harder for a diagnosis. I remember when my older daughter was born - that there was something not quite right - and I just kept hearing the same phrase trotted out - 'if it's normal for her then it's normal'. All my children had far too many symptoms to be classed as normal - but all the dots remained unconnected. This is probably a big part of why I myself avoid going to the GP - my trust has been shattered.

And here we are - my life has changed irrevocably and I'm still not sure it's for the better. I feel so uncertain and have a sense of foreboding - can't shake it off.