Asking for a handhold - DH in ICU

[peachgreen]

DH was taken into hospital last night with breathing difficulties. It was pretty minor, the paramedics weren't even going to take him in but we insisted. He's now in an induced coma on a ventilator. He's had 2 negative Covid tests so they don't think it's that but they don't know what it is.

I'm falling apart. He's my whole life. We have a 2 year old who is a complete Daddy's girl. I need him so much. I can't even be with him now because of COVID.

Wonderful update!
And tea & toast!

Yep, that sounds like delayed shock. All to be expected. Hold tight and don't expect too much from yourself. Crying is a great way to relieve stress. Tea and toast is a good idea for you too, if you can get some in you! Maybe a bath. Or some crap TV.

So pleased for you, my DH has heart issues so always a worry and I remember the time I went through when my DS was in intensive care when he was born, still makes me teary when I think about it. I am so glad things are improving for your DH.

Thank goodness he has turned the corner. I hope you can get some rest tonight with your mind a bit more at ease. Such a lot to take in when you are hit with a health crisis. Take care of yourself.

I'm sure he will have more tests to establish the stage of heart failure in due course, so please don't dwell on that
It is a fantastic sign he is doing so well, so early on He is being looked after, so you need to look after yourself too
It's been, in some ways, more traumatic for you than DH so please take care

So pleased for such positive news, please look after yourself after such a terrifying experience

Thank you all. I'm also googling way too much and starting to doubt the positive slant the doctor put on things so I definitely need to get to bed!

I’ve been watching your thread and am delighted your DH has improved so much. It was an entirely different situation, but my DH spent some time in ICU after elective major surgery, and then after a few days, after emergency surgery, followed by a lengthy period of healing, which required me to learn some specific nursing skills.

He’s fine now, although with some long term issues, but I suffered quite unpleasant post traumatic stress afterwards. 4 years on I have just about stopped having flashbacks.

Some of the things you have said in your posts really resonated with me. Don’t underestimate the effect this will have on you. Accept all the help you can get (here and IRL)so that you have the ability to support and advocate for your lovely DH in his recovery. Also, remember to eat and drink (sugary drinks got me through the times I couldn’t eat), and rest even if you can’t sleep.

I think there wouldn’t be much point in trying to stage him right now without knowing the cause and until he has stabilised. The stages of heart failure are based on limitations to physical activity and symptoms, so once he has stabilised and is on the correct medication they will stage him then and it will be a lot more useful. People move between the stages when they become decompensated and then stabilise. Do you know if he’s had an ECHO performed? The ejection fraction (LVEF) is very useful to know as well as it is an assessment of how well the heart is working.

@elsiebear90 that was so useful, thank you - I didn't realise staging was done once he has stabilised and is on medication, I assumed it was based on your absolute worst moments and would never get better, if you see what I mean. So knowing he could get back to a stage 2 or 3 is incredibly reassuring. I don't know about the ECHO but I'll ask. They did say he wouldnt have a lot of the heart related tests done in ICU and would have them done when he moves to cardiology. One question - his heart rate is currently fluctuating between 106-115 - is this concerning or quite normal given his situation?

@WiseUpJanetWeiss thank you, you are quite right. Im going to phone the doctor on Monday and ask to a) have a review of my current medication and b) be referred back to the mental health team who looked after me when I had PND (I've only quite recently recovered and am still on medication) as I'm determined to try and head off any effects on me at the pass so I can be strong for DH.

My wonderful FIL has offered to pay for two extra days of nursery per week for our little girl while DH is recovering so I can focus on visiting him and caring for him. I won't necessarily need to use them all but having them there will be a godsend. Feel so lucky to be thinking about these sorts of practicalities instead of the awful, awful thoughts I had all of last night. The memory of last night is making me very scared to go to bed and I keep getting a pang of anxiety at the thought that I might get a call in the middle of the night to say things are going downhill. Yuck. Going to take a diazepam and hope that helps.

Peach make sure you use some of that time you lovely father in law is paying for extra nursery to recharge yourself. Obvious you want to be with dh, but also make sure you take some time for you. Sleep if you need to, exercise, watch crap TV, shop, whatever helps you relax and recharge. Your well-being will be even more important over the coming months.

Not such great news overnight. He was feeling breathless again so he's back on the oxygen mask. He also had some irregular heartbeats which he hasn't had before. God this is hard. We've been so fortunate in getting him back and I just want to be next to him.

I'm glad it's oxygen rather than ventilator though. The nights are the worst. It must be absolute hell for you. 😭 He's in the best place and they're investigating so that's really great. Sending positive wishes ❤️

This can be quite common following having been on a vent so try not to worry too much about that. Out of interest were you allowed in to visit or was it done on facetime? As my unit aren't allowing visitors still so I was curious

I was allowed to visit @toiletpaper. The have no active COVID patients I don't think and I had a negative test on Monday. Yes I'm absolutely terrified that they'll put him back on the vent. Would they ring me if they were going to do something like that?

@peachgreen

I was allowed to visit *@toiletpaper*. The have no active COVID patients I don't think and I had a negative test on Monday. Yes I'm absolutely terrified that they'll put him back on the vent. Would they ring me if they were going to do something like that?

Yes they would definitely ring you for something like that. They'll definitely do their best not to retube and put him back on the vent. Sporadic breathlessness after coming off the vent is pretty common, it can be put down to (understandable) anxiety sometimes so hopefully tomorrow will be a better day again

Thank you @toiletpaper, that's so helpful to know.

I’m so pleased your DH is improving.
My recovery was steady with a few bumps on the way when the breathlessness increased for a while (generally when I had done a bit too much). I think it was about 6 months before I felt confident enough to start increasing the length of walks from short, 10 minute ones to a mile or more. It’s a confidence thing rather than a physical one for me.
I can now do about 3 miles, hills are harder so plenty of stops, but it means I can go for beautiful walks around my DD’s home in Wales 😀
I garden, get out and about and if I’m feeling tired I have a quiet day or two. I can’t think of anything that I no longer do other that mountain walks!

I’m keeping everything crossed for you both, onwards and upwards x

((((HUG))))

What a roller coaster, MY stomach is in knots just reading your posts.

Hold onto the fact that he's in the best place, getting great treatment, being investigated for the cause, not just treated for the symptoms.

Good idea to get your meds reviewed, take whatever help you can get.

Use the extra nursery time FIL is paying for to look after YOU.

Let anyone that offers, help, in any way they can. Tell they how they can help if they just offer general help. People want to!

Big hugs to all of you x

Oxygen is very common, especially overnight as your SATS rate drops when you’re sleeping, and if it is already low-ish then it can drop just below the threshold (93%).

Even after I moved from ICU to coronary care I was on oxygen for a while, and even after it came out during the day I still had to use it a night sometimes when my sats dropped.

After my cardiac arrest I developed pneumonia, and at one point I had to use a nebuliser and have oxygen cannulas in at the same time...

Pleas please stay away from google. While it is possible to find reputable information there it is also a breeding ground for fear. if you have questions you are best placed to ask his cardiologist, not least because every person is different anyway and his treatment will be tailored to his specific requirements/condition.

He's been stable overnight and has managed to eat some breakfast which is great. He was on the oxygen mask for a couple of hours but then back on the nose thing which is great. He's had some irregular heart rhythms which again I think are quite common. Going to see him at 1.30 again.

I think ill feel much better when he's moved to cardiology and 2e start getting some actual answers. At the moment they just can't tell us anything.

Wonderful updates OP. And so glad you are going to see him again soon.

OP I just wanted to pop in and say that I have been following your thread since you first posted, and I am so pleased to read your updates. Best of luck to you all. I hope you start getting some answers and a plan for moving forward soon; I know from experience that being in limbo and not knowing what is coming next is one of the hardest things to deal with.

Good news from the doctor this morning - he's cleared a really good amount of fluid from his lungs and he's needing less oxygen which is great. Apparently he's feeling less breathless in himself which is the best news as it will spur him on. He's eating normally, he's had breakfast this morning. They can't say anything about long term prognosis or officially diagnose him right now as we need to wait until he's in cardiology. He should be ready to leave ICU within the next day or so but may have to wait a few days for a bed. But the cardiologist is positive about his short term recovery so that's what's important right now. Thank you all again for your support. I honestly don't know how I would have coped without this thread, it's been a lifeline.