7 days ago we had to call an ambulance for my wife, Ally. She was battling pneumonia but went down hill fast. Her O2 saturation fell to 65% by the time the ambulance arrived.
She COPD and gets pneumonia 2 - 4 times a year. Doctor usually prescribes prednisone and within 3 days she beats the pneumonia. Not this time. I arrived at the hospital a few hours after. I got the kids, ages 14 and 12, fed and settled then I went to the hospital. I was in no rush to get to the hospital because we have done this so many times I was not overly worried. I just thought we had another 2 - 7 day stay while they treated my wife's pneumonia. I was wrong. By the time I got there she was sedated with a breathing tube installed. They said they were shipping off to a different hospital right away because they had a bed available in the ICU.
They said her lungs were not working properly and were not fighting off the pneumonia. Within 24 hours the told me they going to use ecmo on her. I had never heard of this so I looked it up on line. My heart sank so low. I read it was a last ditch effort. There was nothing else to try and it has a 30% - 50% of working. I don't know what to do. It kills me to see my wife and best friend in a situation like this and so close to death. I am trying to stay strong and positive but it is so hard. I have to strong for my kids and I cannot show them how scared I really am.
One of my biggest dilemmas is wether I should take the kids to see her or this just totally freak them out. With the breathing tube in her mouth, the ecmo in her neck and all the iv's. I have told them about how sick she is, about the breathing tube and the induced coma I have not told them about the ecmo because I do not want them to read about it on-line. With all of my wife's medical problems over the years we decided a long time ago to be honest and upfront with them about what is going on. But I thought leaving out the ecmo was a good idea.
Anyway, does anyone have any insite about bringing the kids to see and talk to their mom?
Also I want to thank everyone else for sharing their experiences. After reading some similar stories I am more positive about a good result tonight than I have been all week. It is day 6 on ecmo.
Thank you everyone and I look forward to your responses.
Sincerely,
Marc
Written by
Hutch1972
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My thoughts go out to you and your family, I can fully understand what you are going through as I was in ICU 6 years ago with double pneumonia, severe sepsis & multiple organ failure later complicated with ARDS, I was so critical that it was 4 days before I was well enough to have a CT scan and spent 3 months in ICU with most of the first 2 months in an induced coma, fortunately my 2 children were older my son was 23 and had just got married and my daughter was just 20, the the effect it had on them was devastating and even now my son will never talk about it. ICUsteps produce a couple of booklets that are available for free download from the website at icusteps.org one of the booklets is a patients & relatives intensive care guide &the other is a children's workbook which is design for younger children to understand what to expect, it may be worth talking to the ICU staff with regards to your children visiting as they can explain things more clearly.
I'm sure your wife will be putting up a fight to beat it and be back home with you all asap so best wishes to you all on a good and speedy recovery.
Thank you Bill. I will definitely check out the booklets and make an appointment with the ICU social worker. Thank you for sharing your story. It deffinately helps to keep my spirits and hopes up. And thank you for the info about your children, it helps.
It is amazing how strong you are to have pulled through all this. Awesome.
Hi Marc , I have been to Brompton today where they have this machine as 1 year ago i was also on it , i arrived with oxygen at 30% and little help of me getting throught it. Well i did and i am fit a healthy again. My kids were all older but still shocked to see me with all those tubes and machines going off , they were told if full what to expect and offered to see me not told they had too. Dont be surprised if your wife comes out the the oddest comments when she comes back round and make sure your kids are aware that mum might say some strange things to them. I wish you the best x jason
Dear Marc, I had no idea what ECMO is, had to look it up. I have no experience with regards to that treatment but I was in a coma in ICU for five weeks last year and may have some input to offer with regards to coma recovery, (I'm sure she will), it can be very strange returning to the real world from a comatose state. Just ask. Best Wishes for your wife's return to health. David.
Thank you Dave. That is my second biggest concern. I worry about how hard it is going to be on Ally when she does come out. You must be so scared and confused. And even more so my wife is the kind of person that will be so over come with guilt for putting the kids and myself through this. Also, how scared will she be that it will happen again.
It breaks my heart that after all she is going thru now, it is probably going to be harder on her when she wakes up.
Please let me know how you felt when you came out and what you did to get thru it.
Hello Marc, induced coma seems to generate different 'dreams' for different folks. By comparing notes with other survivors I found one powerful thing in common, in the coma and in surfacing from it people have the strong impression that they were somehow abducted, imprisoned, somehow held against their will by some mysterious agency. Paranoid delusion seems to be a common effect. I fought with nurses, accused them of pretending to be nurses, attempted to 'escape', tearing out feeds and other pipes when I couldn't even walk. Coma dreams were strongly guilt driven. In recovery I needed a lot of assurance that the nurses and doctors were on my side and doing everything they knew to save my life and that I had done nothing wrong. I needed that over and over and over, try to be at her bedside as often as possible, you, family, friends, everybody that matter to her, as much as they, the hospital, will allow you. Speak a lot, familiar voices do get through even when the person seems unconscious. I know nothing about the rest of her medical condition so can offer no insight in that regard but Best Wishes for a successful outcome. Be strong, it's all you can do. David.
I just wanted to tell you my dad had pneumonia and flu AND a super bacterial infection this past fall and was in an induced coma for three weeks. But he pulled through after 6 weeks in the ICU and is back home and back to normal. It took awhile once he got out of the coma for him to be lucid (3 to 4 weeks,) so be prepared. A week out of the coma, he had only enough lucidity to blink yes or no and only sometimes. A week after that he would try to talk but not be able to. A week after that, he could talk and communicate but it was still hard and jumbled and he had to be helped to sit up. Now, months later, he still has some cognitive issues (some memory is literally wiped clean, sometimes he has "brown-outs.") But we have our dad back and he can walk, talk, eat, make jokes, all the stuff he used to do. (He's also 78 which doesn't help with the cognition.)
Also, I did what a lot of people recommend and kept a little diary of dad's time in the coma. A) what his condition was, what me and my mom were posting to FB and emails to his friends/family but also B) emails and notes that people sent back. That may be a lot for you with two kids. I just made one big Word document. So if there's a family member/friend who wants to help, that can be a task to give to someone! Apparently, it helps them feel like they didn't just lose that time.
Thank you so much for all the info. It is great that your dad was so strong and pulled thru. Obviously you and your mom were strong also as you two pulled thru as well. The six weeks must have felt like an eternity. We are only 1 week in and it feels like forever.
With your dad's recovery were you told what to expect? Or were you guys just day to day wondering how much your dad would return to his old self?
It is awesome that you have your dad back. Thank you so much for sharing your story. I am amazed at how much hearing other families stories makes what we are going thru a little less daunting.
It was really day to day and honestly, it felt like waves crashing because whenever we got our hopes up, we'd hear more bad news. It was all very complicated because my dad was stranded in an ICU in Germany and my brother speaks German but not medical German and my mother and sister who did most of the waiting in the hospital don't speak any German. So the doctors were very blunt but it could've been a translation issue!
He was on a breathing tube for about two weeks and then he was minimally respirated, able to breathe on his own but still needed O2. It sounds like your wife is getting better in baby steps and that's what happened with my dad. But there were many plateaus where nothing got better, they just stayed the same. And the doctors would say, "He's alive. that's good No more news."
Probably the scariest part was how long it took for him to come out of sedation and that seemed to surprise the doctors. It was SO LONG (a week or so) before he was able to show he could understand what people were saying by blinking. I went to Germany after he'd been off sedation for two weeks and he still couldn't talk and was really out of it. Those drugs do a number. But do talk to her even though she's out of it. We also played music on our iPhones, and once he got off the tube, used a cotton swab and swabbed his mouth with juice or soda. Anything to get the brain firing. I found this very useful as he was coming off sedation.
The waiting is SO HARD. And you want to DO something. I spent a lot of time googling medical terms which isn't that helpful...But brought me to this site which was really helpful!
So stay strong. It sounds like she's getting incrementally better, small victories are victories! That experience really made me value my family and my family's friends who were so strong and supportive. And it sounds like you have a wonderful family too. Sending good healing thoughts to you, your wife and your family!
Thank you so much for your encouraging words. I am trying to stay positive but it is not always easy when I walk in the ICU room and see Ally with all the tubes and machines that are keeping her alive.
But one of the best things I have done this last week was find this site. I cannot thank you all enough. With all the encouragement you guys have given me and my family and by sharing your amazing stories showing your strength and determination , I have never been so sure that we will have a positive outcome.
It is my birthday tomorrow and with all that is going on I thought it was going to be my worst b-day ever. However,we received some great news tonight. I have always said that my wife is the strongest person I have ever met. She has proved it again. They tried turning off the ecmo machine to see if her lungs are functioning yet. And they were. Here lungs have started to oxygenate the blood a little. They have removed the ecmo machine from her body and even her room. A step in the right direction.
Also, my mom who has been battling stage 4 cancer since September was told that she is 100% clear of cancer. This is the third time she has beaten cancer. Amazing!!
I have some incredibly strong women in my life.
Thank you all for your support and please keep it coming. I know this was just a small victory today, but I will take it.
Just wanted to say I was in a similar position a few years ago. My children were 10 and 6. My husband brought them in occasionally to see me. Kids are very resilient. Talk to your wife she will hear you. Good luck, Lynn x
Thank you so much for your info Lynn. It is very helpful. So far I am keeping the kids fully up to date with what is happening and leaving it in there hands to tell me when they are ready.
Hi, Marc, I would just like to tell you a little of my story. Following the birth of our second child I developed pancritisus , I was very poorly and in an induced coma in ICU for 12 days, my children were 4 & 3 months at the time. I have no memory of being in the coma of anyone talking to me during that time. It was very difficult for my husband with the children. I know they were a lot younger than yours but they never came to see me during my time there. I was in hospital for just over 9 months, my son does have some memories of visiting me. Children are very resilient and I personally think it's a good idea for them to see their mum. I do hope Ally gets better and is home soon. I am 11 years on, and hopefully she will get through this and your family is back together soon. Regards sarah
Thank you so much for sharing your story Sarah. I am glad it all worked outy for you and your family.
We had a great breakthrough today. I said I was heading upto the hospital when all of a sudden my son Brady said " I am coming with you" it was not totally out of no where though. About 4 days ago I said to my kids that since they are not ready to go see mom, why don't they records a hello on my iPhone. My daughter declined but my son recorded a message saying hello and encouraging her to keep fighting. I knew this meant he was close to going to the hospital. He was quite on the ride to the hospital but as soon as we got to the room he put on his gown, gloves and mask and went right over to Ally. He grabbed her hand and started talking to her. It was awesome. After I asked him how it was and he said he had it built up worse in his head. He is going to come with me again tomorrow. What a man!!
For all of you that have supported me through this life changing event, here is an update on Ally. Like I said earlier she is the strongest women I know and one hell of a fighter. And true to form, I think she has finally got the upper hand on the pneumonia and MRSA in her lungs. Yesterday the nurses took her off the drugs that paralyze her muscles. Now her lungs can move and they are functioning pretty well. They still have her ventilated but they have turned down the amount that the machines are doing. Ally is doing about 50% of the work and all of the oxygen exchange. They are only giving her 30% oxygen and she is keeping her blood oxygen saturation between 93% and 96% . They have removed one of her three sedatives and decreased the other two. if everything keeps going well they will slowly remove the sedatives and try to wake her up.I am trying not to get over confident but two weeks ago we almost lost her and now she is almost breathing on her own. I am scared of what she has to go thru now. From what you all went thru it sounds pretty brutal, from all the information you guys have provided, I am making a list of what she might encounter in her next stage of recovery, coming out of the coma and realizing what she just went through. I will print it off in big print and read it to her until she can read it. I will also give a copy to all family members and friends so they will know what Ally might be going thru. I would also like to make a list of things visitors can do to aid Ally in this process. I have a few ideas from some of your replies: talk about kids and other good memories, music, massage, and spray her favorite perfume.
Can anyone, please, offer up either some more examples of what Ally could expect to encounter as she comes out of the coma and clears her body of all the residual sedatives that are built up. If you could also pass along ideas for what we can do to help make this transition easier for Ally. What worked for you and also what did not work, things we should not do.
Ally has done all the fighting up till now. Now it is our turn to join the fight and I would like all of us to be as informed as possible.
Thank you all so much for all your help and support thru this unbelievable time. I do not know what I would have done if I had not found this site. The biggest thing you have all shown me by sharing your incredible stories is that we are not alone. You have all been here before and triumphed. The first couple days when Ally was sedated and no treatment worked, so she was put on the ecmo machine, being the last option they had. Then I read the the survival rate was 30% - 50%. I was done and so scared. I had never felt so all alone. Then you all step in and saved me. I learned that this as a marathon, not a sprint. And to take the small improvements as victories. Don't expect or be looking for everything to get better right away. I even started taking the days with no change as victories. It showed me that Ally was fighting hard that day to not go backwards. Everyone around me saw the change. I was more positive and this made them feel more positive.
We still have a long road to go, but I know we can make it. I just ask for your help again and when I can I will return this help to others.
Hi Marc , As i said in my story your wife may not know what the reality is and what she would have dreamed as it will all be so real to her , She may come out with storys of robot nurses and nurses trying to kill her , She may think you not been there for her and be resentful too , Just smile and let her talk to you and dont call her silly just do not take anything she tells you to heart. She may seem so normal one minute then tell you something silly the next. It all comes back in time but it takes a while so just hug her and smile and tell her your there for her xx
I hope the best for your wife, I know how hard it is from a daughters point of view to see their parent like that. Its hard, and its scary, I believe you should ask them and see how they feel. Just in case it does take a turn for the worst. Unfortunately my step-dad passed away a month ago from the pneumonia and many other things mixed in with it. Just pray and stay positive. She is in my prayers....
Hi everyone, again, thank you for sharing your stories and your hearts. I have some great news. Late Monday the removed one of her sedatives and reduced the other two. Somehow she woke up yesterday. No one was expecting this for at least a couple of days, but as I have said she is a fighter. Obviously she is very out of it but she follows commands and knows what is going on. I thought she was asleep so whispered to her that I was leaving , she started shaking her head saying No. Then I said would you like me to come back later and she gave a big nod Yes. So I took the day off today to sit with her so she sees a familiar face every time she opens her eyes. It is so unbelievably awesome to see those beautiful eyes again.
Thank you all, we will talk soon. I hope all is well for you.
The main thing to remember is the hallucinations seem as real as any other memory. I remember watching a cricket match at John Lennon's house. I know it's not real as firstly I don't get invited to cricket matches at famous people's houses and John Lennon had been dead nigh on 30 years. I was also convinced two of the nurses were trying to kill me.
When she starts to get well there's a really good chance her hair will start to fall out in clumps, nails will break and skin may peel. Her body will have spent all its resources on breathing and fighting infection. It came as a real shock to me and I didn't know why it was happening.
Hi Hutch1972 I know of three people who were put into a self-induced coma, only one recovered from it. Go to the hospital and make certain your wife is checked regularly. She needs to sit up or in a position where she can release phlem or nausea or whatever. This is a must-do!
My story is very similar to @Luckyone, with a few different bells & whistles- my wife had the dilemma of how to best tell our (then 12 yr old) daughter, our oldest girl knew all.
I was supposed to be shipped to an ECMO facility when it got that bad. When it got that bad, the other hospital wouldn’t take me because I wouldn’t survive the journey. My youngest saw me a few times at my worst but it was too disturbing for her. My wife , at that stage, had not told her how serious it was.
She actually took advice from the MacMillan nurses about how best to tell my youngest.
I feel for you all and hope this has a happy outcome for you all.
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