ICU Stay Neuro Challenges

[Doglover276]

Seeing if anyone has any insight.

On May 16th my mom (62 years old) went to her cardiologist with chest pain. She did have afib for the last three year but she had that under control. When she went to her cardiologist on the 16th he sent her to the ER just because he was concerned with chest pains and figured she should get some blood tests to confirm no heart attack and then would hopefully be on her way home. While at the ER it was confirmed she had a mild heart attack and they admitted her. During that night she went into cardiac arrest and was resuscitated quickly. Although traumatic, She was awake the next day totally normal. It was determined she had three blocked arteries. She went to have a cardiac cath the next morning but the blocked arteries were too severe and she was sent for emergency triple bypass surgery. During the surgery she had a massive heart attack and the surgeon went on with the bypass, placed an Impella and RVAD, and she was intubated. After the bypass her organs failed: liver, lungs and kidneys and heart was in bad shape. We were all rushed to the CICU to say our goodbyes. By some miracle she made it through the night and then through the next week - she would open her eyes during that time and react to pain, but that was all. Eventually all her life-saving machines started coming off, starting with RVAD (right side of heart machine) and then the Impella (left side of heart). After her impella was removed and 11 days from her initial bypass surgery - she woke up and was nodding yes and no and following commands! …then eventually she went from a throat ventilator to a trach. After the trach was put in she declined a little and stopped nodding and following commands but would still follow us in the room, react to pain. Then again 11 days after the trach was put in - she woke up, was nodding and even was mouthing words. The mouthing words only lasted about three days but her nodding and reacting to us has been consistent. Then she went from continuous dialysis to intermittent and then miraculously her kidneys started working. At this point all her organs are in good shape considering. She has always been very sleepy during her ICU stay and while she nods yes and no she won’t even attempt to try to speak or mouth words now. The speech therapist asked for an MRI because I think they are frustrated she isnt even trying and assumes it’s with her brain. She has gotten two CT scans which were normal and now an MRI which was normal and two EEGs which show no sign of seizures. It’s also worth a note that about a week after her bypass surgery she got a blood clot in her arm and she ended up losing blood to her right hand. That hand will need to be amputated eventually but as of right now it isn’t infected. My question is has anyone ever seen anything like this? Where someone has all normal Brain scans but is refusing to talk or mouth words and constantly in and out of sleep? While she is nodding when we ask questions she certainly isn’t the same person she was … I’m just hoping she just needs more time but we are coming into 8 weeks right now. If you made it this far into reading, thank you so much. Just looking for some answers ❤️

[BigH63]

Hi. That’s an amazing journey and I’m glad she has made it this far us 60yr olds are fighters. lol

I had two ICU induced heart attacks and they sent me fir the same scans, and found nothing but I to was slow to respond but that could be the cocktail of drugs they put us on. But coming out and a year and a half on I think some damage was acquired though not drastically.

I hope she pulls through and gets out of ICU and hospital.

Word of warning

When us ICU survivors come out recovery is a very long road. She will need to learn to walk, talk, build strength, mental health could be affected, as well as ICU delirium, eat with one hand something I have had experience of as my left arm was paralysed but is working now. She will need lots of support from the ICU rehabilitation team if you have one, if not unfortunately it will be the doctors.

But please ask as many questions as you want here anytime

Good luck

[Sepsur]

I hope you get more positive news over the next week and your Mom starts to respond again as she was - everybody reacts differently to the trauma of critical illness. I experienced hypoactive delirium which meant I was immobile - this lasted about 11 days apparently and it was during the time they dropped sedation

[Boblilly123]

hi, my thought would be 8 weeks really isn’t that long considering what she’s been through, these things take time. My husband was in icu for 6 weeks and has been home for 2 months and the doctors have just told him it takes between 12 and 18 months to return to how he was before. Good luck with your journey

[Gooddaysunshine]

I was in ICU for around 3 months, one month of it in a coma. I would say coming in and out of sleep at 8 weeks is "normal" for what she has been through.

Her body, brain, and metabolic system will have taken a battering, sleep - whether natural or induced by the medications she is on - will be part of the recovery/regrouping process.

I used to hate being woken for the doctors' progress visits to my bed each day and would sometimes sleep through whole days and nights at a time.

Ditto the mouthing words, it was too much effort and I preferred to scribble things on a bit or paper/napkin.

[Bexsieh]

Thinking of you! Sorry I can't offer anything helpful- you've read my post on the MIL so will know we are slightly behind your mum in progress/journey but I know how worrying and frustrating the wait is. I really hope she progresses x

[FamilyHistorian]

I can’t give medical advice however I can explain what happened to me. I had open heart surgery, was in a com for about 2 months, was fed through a tube and had a tracky.

When you start to come round it’s very frustrating that you can’t communicate. I tried various board things where you point I also tried writing. The problem for me was that I am right handed but couldn’t use it because of muscle wastage. So I tried writing with my left hand. Now it was very clear to me what I had written but no one understood it. When I saw the words later the sentences were formed with words but the words were in a different language and back to front. All extremely clear but no one understood so what was the point. Not only only that it was so tiring.

Moving on they gave me a voice box which I could only use for short periods of time. Again very frustrating when it was taken away. I had to learn to talk and swallow. I still had the tube so the SaLT team gave me exercises involving ice chips. I wasn’t allowed to swallow the chip but could let it trickle down. Absolutely fantastic. Once the tracky ad been removed the exercises increased and I could speak but had to hold the dressing on the would until it healed.

I discovered later that one of my voice muscles?? Had been slightly damaged when the tracky had been put in. I was released just before Covid and had no support.

Now 4 ½ years later my voice is fine my swallow isn’t quite right but I know what I can’t eat. I’m 76 now.

Just one other thing it is really important that you look after yourself the journey ahead will be long and hard.

[EdinCat83]

Hi Doglover276. How is your mum now?

My mum was in an induced coma for 3 weeks following a cardiac arrest (she was down for ten mins). All her scans were normal (bloods, CT and MRI). Lack of oxygen sent her brain into an electrical storm (status epilepticus). She now two weeks off sedation and is only opening her eyes (spontaneously and to pain). She has not moved a limb yet. She has the odd toe twitch. No tracking yet. However, I think she needs more time. She has given us little signs of improvement (eyes open longer, blinking, reaction to stimulus on feet, sometimes tracks the light). I keep telling the doctors to give her more time. Time is the biggest healer. I cannot comment on voice issues as my mum still has a ventilator but all her tests were normal (including two MRIs), and she’s still not tracking yet or purposeful movements. But she’s been through a lot and I think she just needs more time to heal. I wish your mum a speedy recovery x