In need of some encouragement and insight. (wakin... - ICUsteps

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In need of some encouragement and insight. (waking up from coma, dealing with the trach, etc...)

Shilla39 profile image
Shilla39

Hi,

My beloved mom (69 years old) has had a cardiac arrest about two weeks ago. Luckily (in a way...) she was already in hospital at the time (she's gone through a lobectomy of her upper right lung lobe, after being diagnosed with lung cancer. A relatively small tumor with likely no metastasis. Still waiting for the biopsy results to know for sure)

The cardiac arrest happened when the doctor was already in the room with her, talking to her, so the CPR was immediate, to our understanding.

She been in a chemically induced coma for 9 days, during which her kidneys failed, and she had blood clots sent to her legs and spleen. They operated her to save her legs (which they did) and also gave her 3 dialysis treatments. We were sure this is likely the end and were mortified. On the 9th day they put a trach and started to wake her up. also - she started giving urine (with a urinating drug, but still...) the following day we came to visit (we could only visit in specific hours while she's in ICU) and while I was sure she might not respond just yet, she did mark 'yes' by blinking when we asked her questions.

This is now her 3rd days after (sort of) waking up.

She nods for yes and no, and seems to recognize us. She obviously can't talk now.

she can move all her limbs (though I think she struggles with moving her fingers)

While I never use to pray, I constantly pray now... who knows.

I'm not sure what I asking for...

Maybe - stories of encouragement. Do you know of other people her age (or older) who survived something like that?

Also - those of you who experienced that - how bad did it feel to wake up to find yourself with a trach?

They say there's a chance she'll be off the trach someday, but can't know for sure. it depends on her lungs (she also has copd)

I'm so scared she'll have a poor quality of life....

Anyonw? any words of advise? (whatever comes to mind)

Tanks in advance!

17 Replies

Hiya and sorry to hear about your mum and glad she was in the right place at the right time x

She will be still drugged up to the eye balls at the moment so even though she aware your there she hopefully won't be aware of what she has been through (I know I wasn't) it took me 5-7 days to realise I was even in hospital, my trachy come out after about a fortnight and I was using children's books to communicate because I couldn't write because I was so weak

I am not of your mother's age but I know plenty of older people who have survived such an ordeal I hope she has a quick and smooth recovery and is home soon enough just remember she has survived the worst and she is obviously a fighter X

Shilla39 profile image
Shilla39 in reply to jojokarak

Thank you so much for your sensitive and thoughtful reply.

It will be reassuring to your Mum that you are there though due to the medication to induce coma it will leave her unable to properly respond. Please remain hopeful. I had a close member of my family in an induced coma and it took weeks for them to properly come around. I would advise keeping a diary so you can record the improvements day by day. It helps to look back on these to see how far she has come both for you and for her. Thinking of you and your Mum.

Shilla39 profile image
Shilla39 in reply to Copse77

Thank you so much, will do!

Sorry to read about your mom.

My dad had something similar except for the lung cancer. He is 65, he had a small stroke, we took him to the hospital and being there he had a convulsion and it all got worse! He was put in an induced coma and then there in the hospital he got pneumonia! We couldn't believe that that was happening! They had to put a trach after 10 days. He had dialysis every third day because his kidneys were not working! It's incredible how being there in the hospital took him to such a bad condition! BUT the good part of it, is that he made it! He fought against pneumonia for a month, then he got an urinary tract infection. It seemed like the stroke was the least bad thing it happened to him.

When they stoped the sedation he was not responding, and doctors were talking about brain damage. It took him 5 weeks to move and open his eyes and be aware that we were there.

He's now home, weak but getting stronger every day. No trachy, his kidneys are perfect (they get bad because of all the medicine and stuff they get in the hospital, but they recover).

About praying... I NEVER went to a catholic church in my life!! until my dad was there, suffering and almost dying. I got on my knees and I prayed like never before in 32 years. It's fine, it's a normal reaction, and it helps a lot to know that we are not alone. I also used to thank every night to god that he was still alive. It also helps to thank for every detail, for every positive thing that happens during the day, that way you don't focus on the bad things and it helps for you to say positive and send your mom this energy as well.

Yes, your mom has a chance!! Don't give up. Even if they do this and that to her, most of the things that happen to her are pretty common, and people make it anyways!

My best wishes to you!!

Shilla39 profile image
Shilla39 in reply to titiday

I cant thank you enough for this response. I will try to adopt the thanksgiving part as well.... I've been depressed and anxious and this might help. Wishing loads of health and full recovery to your dad.

Hi, I was 61 when I was put in an induced coma with multiple organ failure due to a ruptured colon. My family were told I had little chance of survival and to prepare for the worst. But I started fighting back and after about ten days I came out of the coma. However, it took some time for me to become fully aware of what had happened and where I was. During the period of heavy sedation you are living in a world where dreams and reality are indistinguishable. I'm sure I was talking some pretty strange stuff to my family when they fitted a speaking device to my trachy, and that was after four weeks. So be patient, it's a long road. For all I went through, I can have no idea what my family had to endure, except from what they tell me. My thoughts are with you, take care of yourself; good luck and best wishes for you and your mum.

Shilla39 profile image
Shilla39 in reply to stevet11753

Thank you so much, Steve.

Do you have any memories of what it felt like to wake up and finding out you had the trachy in your throat? Was it mortifying, or were you still too drugged up to give it real thought?

Its hard for us to tell how "haunted" mom is right now. She does seem to know who we are, and even smiled when we mentioned her grandkids today (!), but at the same time- her hands still have to be tied, so she doesnt pull the tubes out....

stevet11753 profile image
stevet11753 in reply to Shilla39

Hi Shilla. I was still intubated with the tube in my mouth and throat for three or four days after I came to before they replaced it with the trachy. That tube was so uncomfortable the nurses said I smiled when I came to from it being replaced with a trachy, which was far more comfortable. Oddy, I can recall the procedure being performed and the nurses standing over me, so maybe I wasn't fully sedated during it.

I do also seem to recall my hands being bandaged for a couple of days after coming out of coma, so maybe that's standard, to prevent patients pulling at the lines and tubes. It is a very confusing period and I can remember little about it, except waking to see the excited smiles on the faces of my sister and niece. I think you're just too drugged and confused to know what's going on.

Keep us posted about how your mom is doing. Best wishes to you all.

My mom is 68 and just went through a similar ordeal. Have faith and know that she is on the road to recovery. It took my mom 3 weeks after her induced coma to get the ventilator out and breathe on her own. When your mom is a bit stronger, bring her a notepad and pencil to write with to communicate with you. At first my mom didn't have the strength and it was very hard to decipher, but we would eventually figure out what she needed. She would ask for ice packs to cool her off, or for us to ask the nurse to give her something to help her sleep at night. After 3.5 weeks she was able to breathe on her own again.

Keep strong!

Annie

Shilla39 profile image
Shilla39 in reply to Sl8rS

Thank you so much, Annie. So glad to read your mom is doing better!

Did your mom also had lung/ breating issues prior to the intubation/icu?

Sl8rS profile image
Sl8rS in reply to Shilla39

She had severe pneumonia which became sepsis and full organ failure. She also needed dialysis and countless other IV drugs while in her induced coma. It was a living nightmare and we really thought we would lose her. Just like you I prayed more than I have ever prayed. Wishing you strength and a full recovery for your mom.

Shilla39 profile image
Shilla39 in reply to Sl8rS

Thanks, Annie.

One more question: Did your mom's lungs make a full recovery? If so - how long after?

Mom's kidneys started working again last week, and she is able to urinate (but with the help of urinating medication so far)

Sl8rS profile image
Sl8rS in reply to Shilla39

It took a long time, over 2 months for them to recover.

You have my deepest sympathy for what you are going through. I am only 52 but last November got a very severe infection that resulted in emergency surgery and 12 days in an induced coma, because of the infection and assorted complications including a Deep Vein Thrombosis, an air bubble (I don't know the technical term, but that is how I have processed what I was told about that part), a scare where my heartbeat slowed down and they thought it was infected and a day where it looked like my kidneys were shutting down. And with all of that, I am i perfect shape now, and there is no lingering effect.

In my case the trach was put in at the time of the surgery (Nov. 21), and it stayed in for a full month, only being removed on Dec. 21. When I woke up on Dec. 3 I had no idea why I was in the hospital or what was going on. That was the worst part of it by far - not knowing why I was there or what was wrong with me and not having the ability to ask. I couldn't move my legs because they had totally atrophied, I could only move my arms with difficulty, because they had had to wrap them so I wouldn't pull at stuff while I was in the coma, and I couldn't really move my neck because of the way it was wrapped, and the oxygen that was going to it for a few days. I apologize that I don't feel like I am being very articulate at this moment.

PHYSICALLY, THE TRACH ITSELF DID NOT HURT. The strap that they used to hold it in place was very uncomfortable though, until a few days later when I found out that it could be done a little looser. However, I imagine that they needed to keep it very tight until they knew that I was both conscious and calm enough to not pull at it or thrash around. It was also a function of who the respiratory care giver was, as some prefer to leave it tighter out of either caution or the nature of their touch or training.

It sounds like your mother is strong despite what is going on right now, and is a fighter.I think the best advice that I wish had been given to my family and friends, or that the nurse had followed, would have been to talk to me when I couldn't talk, and tell me that I had just been sick and was not paralyzed. I would do this over and over until you are sure that she remembers from time to time when she wakes up, as I am told that there were a few days when the sedation was being lightened when I seemed to react to people, but I have no recollection of that at all, and still don't remember anything between being taken for a cat scan and "waking up" on Dec. 3.

The best thing that happened for me was when someone from Occupational Therapy told me where I was and that I had been sick, because I imagined that I had been in a car accident (nothing else made sense to me, since I had never been admitted to a hospital in my life) and that I was going to be paralyzed.

Getting back to the physical aspect - struggling to use limbs probably makes sense from an atrophy standpoint, and it sounds like she was way ahead of where I was at that point. Even when she feels stronger, I would push for physical therapy. And even if she doesn't end up having the trach removed, it will be okay. This is what my experience with the trach itself was like:

Whether it was from the trach itself or other causes, mucous would collect in my throat, and need to be suctioned regularly. But they gave me something I could use to suction from my mouth, and respiratory therapists would suction through the trach periodically. Again, it didn't hurt, but was weird and slightly uncomfortable.

I was able to eat within a few days of waking up, even though I had the trach in. That started as soon as I passed what they call a "swallow test" where they gave me very small amounts of different foods with a dye in it and were able to observe that it passed through my system properly. I threw up a few times but we figured out that that was really when I was being pushed to eat too much or food that I didn't like - once my family starting bringing food in for me, and let me eat at my own pace, that stopped.

I was also able to speak with the trach in, by means of a valve that was placed in it after a few days, and affected the air flow in some way. I'm sure I didn't sound quite myself for the first few days, but as my husband likes to say "even a tracheostomy couldn't shut me up". They started by only leaving that in for a few minutes, and then a few hours, until it built up.

The next step was about a week after I woke up, and that was to put a cap on the stoma (which I believe is the actual term for the hole in the neck. That happened just less than a week after I woke up, and when the cap is in place, a person is breathing completely on their own. Normally the trach would be removed shortly after she is able to breathe properly and comfortably with the cap on for a day or two consequentially. In my case the trach remained in for almost two weeks extra while I was capped because the surgeon wanted to make sure that there was no chance at all that I would need to be intubated or given a tracheostomy a second time. But I was functioning totally normally during that time. My biggest challenge was finding a way to shower /clean up while it was in, other than sponge baths. Eventually I discovered "stoma covers" which are sold at surgical supply stores. They were easy to apply and remove, and let me shower, which felt like heaven.

I apologize for making this so long, but I wanted to try to give as much of a feel as I could about what my experience was like. Everyone's situation is different, but if her experience is like mine, the trach was not bad physically.

I hope it all works out well.

Shilla39 profile image
Shilla39 in reply to Canediver

I can't thank you enough for your lovely, elaborate answer.

Mom's been with the trach and awake (off sedation) for 5 days now, If I'm not mistaken.

yesterday she ate some ice cream (!), smiled a few times, and even grabbed my hand a couple of times and kissed it. This obviously made me burst into tears immediately...

I wonder whether she's still hallucinating at this stage....

We did bring her a wipe out board and markers, but she marked that she's still not ready to write, so we'll wait.

I am so glad that she is continuing to improve! The fact that she is eating and reacting to you are great steps, and I can't even imagine the feeling when she grabbed and kissed your hand.

She will use the board when she is ready, but it is always better to have these things ready before they are needed. Writing was tough for a while, even while lying down. I remember trying to use my ipad to write with the keyboard in notes, and couldn't even get the password right the first time.

Another option is to ask the nurses for a board (I think Occupational Therapy is where they found one for me) that has large letters pre-printed on it so she can point at the letters. If they don't have one, you may be able to just make one with a simple pen and paper with the letters (spaced widely) and some common words and/or names.

It takes a while to point at letters but it might be easier for her than writing, especially if you are able to start finishing some words for her. That helped me to communicate a lot, which in turn made me feel better overall.

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