severe pain after open heart surgery. Update on mum. Week 6 in hospital

[Melangel]

Hello. Mum came out of icu 12 days ago after a whole month. She had a valve replacement surgery with complications. Ct scan shows bilateral stroke. Once out of İCU, She started responding which was great. She is able to move her limbs, left side weaker. However, as she was sedated for a month in icu, her sedation started wearing off, which she then started experiencing pain. The pain has got severe for the last 5 days . Mum can’t cope with the pain. Doctors and nurses are trying everything they can but she isn’t cooperating. They also said she has mild delirium. She is constantly moaning and screaming. Will this phase pass? Has anyone experienced anything like this?? İm so scared

[Sepsur]

The simple answer is that usually it passes. I’m guessing the medical staff are loathe to give her pain meds in case this increases her delirium - which it can.

Very distressing for her & you.

This pdf explains more about delirium 😊

icusteps.org/assets/files/i...

[FamilyHistorian]

I went into the Birmingham QE back in December. I had pneumonia, possibly sepsis and my artificial aortic valve had to be replaced as it was rapidly breaking down. I was in ICU for some time which included 6-8 weeks when I was sedated / ventilated and I had trachy. I also have an underlying condition rheumatoid arthritis consequently I was told that I was in quite a lot of pain. Hallucinations/ delirium is par for the course and whilst sedated I didn’t know anything about the real world despite the family said I was communicating with them. Tubes etc were fair game to be pulled out but I didn’t know. I came out mid March and over a period of time particularly starting in June I have gradually recovered thanks to ICUStepsChester where i do chair exercises twice a week and also yoga twice a week. Additionally they run a support group on a Thursday evening- all on zoom.

I’m not too sure if your mum is home yet but it is really important that you care for yourself and you you’d be welcome to join the relatives group on a Tuesday evening. My wife has found it very helpful. By the way I am 72 and don’t live in the Chester geographical area. If you want contact details message me

[Melangel]

thank you for replying Sepsur and Familyhistorian. You and your family must have gone through a hard time too. Once out of icu, mum started responding with nods, eventually words. The nurses and doctors were really happy. Shed have the pains moaning and groaning but would answer my questions on the phone with meaningful context and full sentences. İ think she recognised my voice but when i asked her to say my name, She wouldnt and eventually said i dont know who you are 😭. Saturday and sunday shed be restless unable to sleep , so doctors decided to change medication. Since then , her communication level has dropped, more moaning and groaning , agitated and now screaming . She wont open her eyes and she isnt cooperatıng with anyone :(. We are trying to explain to the New nurses and doctors that she wasnt like this prior to sunday. ( there was a changeover of hospıtals on monday). We feel so helpless

[FamilyHistorian in reply to Melangel]

Unfortunately changing hospitals can be like starting all over again! It’s even worse when the change is between health authorities. I started in my own health authority before going to the QE and then returned albeit for a couple of days. It was even more daft as I was on nightly feeds and because I was transferred during the evening I obtained some feed to take with me but once back they wouldn’t use it as it hadn’t been prescribed by them so I went without my feed!!