Advice on Dad, please read.

[Emmyn91]

Hi I’m writing here to look for some advice really. My dad has been in the ICU for 2 weeks now after an internal bleed where he had emergency surgery to stop. He has decompensated liver failure. But his levels have improved over the 2 weeks. He had tried to been woken during the 2 weeks but didn’t respond well so they changed his meds. He has now come off blood pressure meds and maintaining good blood pressure on his own, his ventilator program has changed so he can take breaths for himself and the machine will kick in as and when it needs to. His sedation is down very low only slight sedation to keep him relaxed and stop biting the tube. He moves his arms, legs, head spontaneously, his eyes are open but looking up (not focusing) he can blink and close his eyes. He is not following commands. This is 2 days of progress. Am I expecting too much too soon? When I spoke to the nurse this morning I asked, is this normal to wake up like this and she said it was abnormal (which terrified the life out of me) so now I am just very very worried about my dads brain and will we ever get dad back 😕 any advice/experiences would be greatly appreciated.

Thanks,

Emma.

[Sepsur]

I don’t know why the medical teams measure us all in such an absurd way. Many of us failed to wake in the so-called prescribed method because we each are individuals with a unique physiology - renal failure will slow down waking, as will the types of drugs used to sedate your father. We also have different tolerances. A red head ( for instance) can need more sedation and will therefore take longer to wake ( this is purely down to a quirk of genes).If you are interested - we run a relatives drop-in on zoom where you can raise your concerns. cc-sn.org

[Emmyn91 in reply to Sepsur]

Thank you, I will just be keeping hope. It’s really hard due to covid restrictions ect. Thank you I will deffo have a look into it 😊Thank you so much,

Emma x

[CanadianKai]

Oh, honey, I am so sorry that I have no advice! All I know, is that I came out of a long coma, in my fifties, with a sometimes 8% chance of survival, and I not only made it, I made it through another coma one year later, completely unrelated! What I'm trying to say is, there is ALWAYS hope!! xo

[Emmyn91 in reply to CanadianKai]

That’s amazing, it is comforting to hear positive stories and know that anything is possible. I’m glad you was able to recover. Dad is very strong minded and stubborn so I’m hoping that will help him 😂Emma x

[FamilyHistorian]

This time 2 years ago I was in a coma having had an op, pneumonia and sepsis. I was put under before Christmas. It took a long time for me to come out of it despite them trying to ween me off. My family were in initially told it would be few days, this changed to a week, then a month. And then more sensibly they said he will come round when he was ready. Which was nearly 2 months later. Whilst in the coma I had a trachy I tried to pull out my tubes and was violent.I think the most important thing to remember is that we are all different.

[Emmyn91 in reply to FamilyHistorian]

Yes definitely, this is what I thought we are all different and over the past 2 weeks he has had such a lot of medications pumped into him it’s got to take some time to get things back to normal. I’m keeping everything crossed, trying to stay positive and keep hope. It is just very hard not to worry, Emma x

[Copse77]

It is horrible to go through this I know. 4 years ago this month I was like you waiting to hear if my brother would wake upFrom an induced coma and flu. It was really hard. Everyone is individual and different in how they respond. Your Dads organs need time to recover and the withdrawal of sedation can take time as his body is not functioning as normal to remove wastes and having to recover from critical illness. My brother took 1 month to wake up and was on a ventilator and dialysis because his kidneys weren’t working. It’s not like in the films where people are instantly awake it is a gradual process of regaining consciousness.

[Emmyn91]

Update on dad, Yesterday when I went to visit him his eyes were open and focusing on me, I asked him if he was ok and he nodded. The doctor told me he had done all he had asked like squeeze my hand ect. And the test to remove the ventilator he had ticked all of the boxes except the main on being able to cough, so was feeling very positive (probably stupidly 😕) it seemed things were going on the right direction. Spoke to the nurse this morning who told me he is now non responsive, sleeping a lot and not following commands 😩😕 is this normal? I’m hoping he just tired himself out, and tomorrow hopefully will be a better day 🤷🏼‍♀️ I have no idea! It feels like 1 step forward and 2 steps back 😩😕

Thanks for reading,

Emma.

[Copse77 in reply to Emmyn91]

It is really hard but ICU is a rollercoaster. I was advised to keep a daily record so to focus on the positives then when you have hard days when your Dad is unresponsive you need to focus on the good days. Keeping the timeline record was a good way of seeing overall progress and staying positive as new infections and setbacks occur. It is one step forward and two steps back but stay strong and focused for your Dad and remember the good progress he has made.

[Emmyn91 in reply to Copse77]

Thank you so much for taking the time to reply. Keeping a daily record seems like a really good idea and I will definitely be looking to do that 😊 it’s so hard as many I’m sure we have never been through this and just don’t know what to expect. It doesn’t help that I’m currently 36 weeks pregnant 😩 so the extra hormones don’t help with the worry! Thanks,

Emma.

[BabyRhino]

Hi Emmyn91, it's almost 2 years since my husband was going through a very similar stop/start process of waking from an induced coma. I remember vividly the unfocused eyes & initial lack of responsiveness, but I also remember the first time he turned his head in response to my voice. Over time his senses returned, and to cut along story short, as I write this he is downstairs getting ready for work.

[Emmyn91 in reply to BabyRhino]

Thank you for your reply, it’s comforting to hear positive stories. Yesterday when I visited dad they had removed his ventilator and said he was doing well breathing by himself. He was awake and more aware he even kissed my hand when I was saying goodbye. I hope this can continue, but I’ll be honest still very nervous about calling the nurse this morning incase he’s less responsive today but I guess he still needs to rest and recover. Slow and steady wins the race 🤞🏻 Thanks,

Emma.

[CLM68]

Whoever that nurse was behaved utterly irresponsibly in telling you that and has caused you great stress in an already stressful situation! I was intubated but they couldn't bring me out of my coma...it took several attempts over 10 days before I was able to breath without the tube. I was given so many drugs I had no idea where I was other than the obvious of being in a hospital. It took a while before I was aware enough to follow commands and to even speak!The body recovers at a different speed for everyone. Ask if he is going to have a CT scan, I had one just to check that nothing else was going on due to my illness and I know that it was a huge relief for m family when it was OK.

Remember it is your right to ask questions...this is your Dad!

[Emmyn91 in reply to CLM68]

Yes it definitely wasn’t the most helpful at the time, it felt like our world was crashing down! 😩😕

[Emmyn91]

Quick update on dad,He is now off the oxygen mask and only on nasal oxygen. Physio had him sitting in a chair this morning 😁 it has been deemed he is well enough to move out of ICU and on to a rehabilitation ward 😁 fingers crossed things keep going in the right direction but I know he is in the right place. Thank you all for your comments they really did help me alot.

Emma.

[Brett631973]

Hi just read your post, dad seems to be on the mend. Your not asleep whilst in a coma you cross over to the astral plain. Its not like dreaming its very real. Some say vivid dreams... I say no its nothing like that. Difficult to explain unless you have experienced it. Perceptions change fast. Being by his side holding his hand and talking about good times helps the astral plain change. At points if you have done something bad it will manifest into something not good.

Which is very scary, The two most important days of your life are the day you were born & the day you find out why. Best wishes for you both take care. X

[LynninCalif7]

Give it time!!!!!!