ICU with intellectual disability

[abhil]

Hi all,

I have a loved one who has several disabilities (one being an intellectual disability) who has now been in ICU for 10 days. He was brought in as he had suddenly taken very unwell over the duration of the day. He was unable to walk/balance, couldn’t support his weight and his breathing was laboured. When the paramedics arrived that evening he had a seizure. He was attempting to resist their care during the time they were transporting him to the ambulance and also in the ambulance (by trying to remove the oxygen mask, trying to remove his wires etc), so I believe the seizure was short and he didn’t lose consciousness for long.

On admission to A&E they carried out some tests and they told us he had a bad chest infection, low white blood cell count and dangerously low sodium. Numerous tests have been carried out since: a brain scan shorty after admission (which was normal), various blood tests, a lumbar puncture (with meningitis and encephalitis since being ruled out), and EEG (which was normal). It seems they believe the cause to be due to hyponatremia.

He was place on a mechanical ventilator and in a medically induced coma and then taken to ICU. After a couple of days they reduced his sedation but he became agitated. After 2 unsuccessful attempts, the doctors agreed that they would remove the sedation and extubate on the same day. He was on the lowest setting for both the oxygen and assistance levels, which is why they wanted to extubate asap.

He went without the ventilator for a day and a half, but they had to intubate again as he was too weak to cough up the fluid in his chest (we were told today that at some point he will have vomited and swallowed it). The next step that was being discussed was to do a tracheostomy and to once again wean him off of sedation and then the ventilator.

During the time he was off both the sedation and the ventilator, he opened his eyes and was following voices. He was watching the nurses and doctors as they walked the floor, he would look at us when we would speak to him and he would turn to his vitals machine if the alarms sounded. Also, when he was off sedation or on light sedation, he would move his head, his feet, and try to switch positions. What he was unable to do was respond to commands of squeezing hands etc. However, with his intellectual disability and also some days when he would experience greater pain or agitation caused through his physical disability (paralysis impacting one of his arms) it is not uncommon for him to go through periods where he wouldn’t speak to us and/or wouldn’t do what we would ask or encourage him to do. I can only imagine this would be heightened after coming off sedative drugs, so we all thought that it would take him a while to come around.

However, today we were told that a tracheostomy would only be considered if they ruled out any extensive brain damage (as the last CT was taken when he was initially brought in 10 days ago) and that this was a concern as he was unresponsive when off sedation. The consultant said that the lack of responsiveness may be due to delirium, but that brain damage was also a concern and that they would check this via a CT today and an MRI next week (given that todays scan was ok). This then prompted a quality of life and then an end of life conversation to discuss our wishes. I said we will be advocating for him throughout.

We waited (and dreaded) the results of todays CT and thank god it came back normal. So we will take it day by day and next steps look to be tracheostomy and an MRI next week.

I think I wanted to share on here as I feel numb and like I’m floating through the days, as well as to ask if anyone has any advice or information we should know? Any thoughts on the above? Being someone’s voice is so difficult as you want to make the right choices, and when that person has disabilities that impair their ability to share how they feel it feels almost impossible. I hope we are doing right by him.

[Lellynelly1]

Hello. I’m afraid I have no advice for you but I just wanted to say I’m here and have read your post. I am so pleased the scan came back normal. I will definitely confirm that any confusion, or agitation, or not thinking straight are normal for anyone who is being brought out of a coma. I actually phoned my husband from ICU on my mobile and pleaded with him to take me home. I genuinely thought he could just come and get me. I didn’t recognise that I was in ICU and and attached to machines drips and catheters. He will confirm I made that call and I remember doing it. I still remember feeling so angry and disappointed that he was refusing to come and kept telling me I ‘wasn’t well enough’. ICU does strange things! Good luck with your loved one, and be prepared to take it slowly. It took me about 18 months to recover physically from ICU (I was on life support for around 2 weeks) and around 2 years mentally/emotionally. Many people can suffer with flashbacks and hallucinations. Post Intensive Care Syndrome is real.

[abhil in reply to Lellynelly1]

Thanks for your reply. I’m sorry to hear that you had that experience, it must have been incredibly difficult for you. I’m glad that you have made it this far and that you have taken strong steps in your recovery. Also, in sharing your experience, you are definitely helping to keep me hopeful!

[Rhyl1 Partner Moderator ICUsteps]

Just keep advocating for your loved one. Sometimes healthcare staff can make assumptions about a disabled patient. You know him best. Fingers crossed that the MRI is ok. Look after yourself.

[Grant_za in reply to Rhyl1]

You are 100% correct regards disabled patients. Only close family are really familiar with the real extent of disability & ability. Close family are also familiar with the small signs that often go unnoticed or ignored by medical teams, simply because they are unfamiliar with these indicators. A medical team really has no accurate benchmark by which to measure a patient with multiple "disabilities".

To Abhil - maintain close contact with the medical team and continue to to point out any "small" things going on which the team may not notice or understand. The more information they have, the better they are able to understand.

[abhil in reply to Rhyl1]

Thank you so much for your reply. I do agree, and during each conversation with his doctors and nurses we are giving as much detail about his ability, personality, responsiveness, hobbies etc as possible. We are hoping this will help them better understand the person they are treating and the brother, uncle and friend that so many people adore and are willing to recover and come home to his family.

[Sepsur]

In many ways, we patients in ICU are all reliant on our loved ones advocating for us, none of us are in a position to argue for what is best for us.

Some staff can be very bleak assessing our chance and you know what … this place is heaving with those the doctors didn’t think would survive. Fight the good fight💙

[abhil in reply to Sepsur]

Thank you very much for replying. I’ve read many of your replies on this forum and they have brought comfort and hope during a period of such incredible difficulty. Thank you for sharing your experience and also for this perspective. You’re right - those without a voice need their loved ones to push, advocate and lobby on their behalf so long as there is a chance of recovery.

[Copse77]

You are absolutely doing right by him caring and advocating when he can’t speak for himself. It is good the results confirmed no brain damage. It may take weeks before he is fully responsive as the drugs used to induce coma can linger when the body is trying to repair and heal after being ventilated in an induced coma. Remain hopeful is the best advice we were given when my previously fit healthy younger brother lay unresponsive critically ill. Now 4.5 years on he is fit and well. Best wishes for his recovery.

[abhil in reply to Copse77]

Thank you so much for sharing this. I have read up (an incredible amount) on the impact of sedative drugs and the length of time it can take for the body to process them - particularly when they are removed and in this particular context. You are right, it can take a significant period of time before the patient shows full responsiveness. Remain hopeful is something that we are hanging on to, and some days this is easier to practise than others. Thank you again for your response.

[Twoblu in reply to Copse77]

unfortunately. My young relative remains in bed. Critical illness neuropathy.

Critical illness myopatjy

Coming up to three years now. Booted.out of hospital to a care home. Never hear.of ICUSTEPS.

He is paralysed from the neck down

What i read is that patients are given paralysing drugs when put into an induced coma. He barely speaks. One two three sometimes four words if we are lucky.

He went into hosputal walking talking one day and had a breathing issue. He was ventilated. And now that is a major turmoil.

Is it the paralysing drugs he was given that have caused this mans life to change forever now as a quadrapleagic ?

To this day. He has not had any reasonable follow up. He has not spoken to the team from the ICU.

He is still waiting for a comfortable wheelchair whuch does nit cause pain or discomfort..

Mist if tge time he us in bed.

He is light senditive. Hearing sensitive. Barely speaks. He has meds through a PEG he is insulin dependant diabetic.

He does not have 1.1 input. Only when family can visit.

The question is. What paralysed him. Was it the drugs at the hospital ?

If he had been given intense physio and mental heslth encouragement at the beginning would he still be like he is

Does anyone have any views or suggedtiond about this.

Thank you to tjis forum.

[abhil]

Hi all. Your comments and replies have been amazing to read. Thank you all for taking the time out of your day to read my post and for sharing your experiences and thoughts.

Thankfully I have some good news! He has made some great progress over the past few days and the doctors decided to extubate again this morning as they feel it could be successful this time around before moving straight to a tracheostomy.

He is alert, maintaining eye contact when we are speaking to him, responding to commands by squeezing our hands, showing emotion (smiling at our jokes), and moving his head to signal yes and no! He also seems to be stronger when coughing to clear the fluid around his lungs which he wasn’t able to do the first time they attempted to extubate. I know that the ICU experience is not linear and that things can change, but todays news feels incredible to share with you all. Keeping everything crossed that he continues to make good progress in the coming days and weeks.

[Copse77 in reply to abhil]

It is wonderful news that he is responding now. Good luck with his recovery. It’s a difficult road but with the love of you all be will get there

[kede in reply to abhil]

Sorry Abhil, hope your family member makes a full recovery. Lots of prayers x

[Twoblu]

You are between a rock and a hard place. Do whatever you believe your loved one would want. The communication hopefully come back in time

Hang on in there

[Ta-thanx]

Sounds like good news. If he is responding as good as you say this is great news. But something to remind yourselves is he could still be seeing things that aren't there, delirium and hallucinations are very real at the time, but if he's responding to your voices keep talking to him even if you don't get a response keep talking to him, he'll know you are there.Strange times for you all.

[kede]

Hello Abhil, my brother has been in ICU for 8 weeks. He got sepsis and went downhill from there. He had a cardiac arrest, which led to a major stroke because of a heart valve infection which had vegetations on it and has effected his brain, also having seizures. We are devastated because of whats happened. We are hoping and praying he gets better some how. Doctors have given him a very poor prognosis. We don’t know what to do. He has been sedated for a long time, been in a coma from day one. When they took him off sedation he has woken up but no response or movement. Can anyone help us if you are going through a similar situation. On top of all this my beautiful brother has a learning disability. Dealing with this is extremely hard. Please help anyone