My daughter in vegetative state

[Nawalsaleh]

Hello everyone, I’m new here. My daughter 21 years old is in the icu for nearly two months now. She has epilepsy and stomach bleeding. She was put on induced coma and intubated for a month. She ‘s been weaned from the ventilator but still can’t move or talk. Sometimes she opens her eyes but not wide and doesn’t follow objects. Her ammonia level is very high though we gradually decreased depakote and stopped it . I’m going through a very hard time. I weep most of the time when I go home. She developed ARDS in the icu and recovered. She doesn’t squiz my hand or do anything that shows life. I ‘m afraid she’s paralyzed for erer.Did anyone go through similar conditions and recovered? How long did it take you to show improvement? Thanks

[BBDEBS]

Hey there, can’t imagine what you are going through. Keep strong.

There are people in the group who were in coma for many weeks and months and recovered to a point, none of us are 100% who we were but we are pretty damn close.

Has she had brain activity measured? If not diagnosed vegetative, then don’t give up hope.

D x

[Nawalsaleh in reply to BBDEBS]

Thanks alot for your reply BBDEBS , doctors don’t know exactly why she’s not coming around. Ct scan and eeg don’t show vegetative state or brain damage.

[BBDEBS in reply to Nawalsaleh]

Well that is a major blessing!!! People will reply I promise. My coma was 2 weeks but took me 5 of those 14 to wake up so I suspect the longer she’s under the longer it will take to recover.

Sepsur any advice?

[sicksister]

My sister was sick and all her organs failed... that was almost a year ago...she was in icu for 4 months and then in a medicine unit for another month. Now she has to go back every other day for treatment or she will die. I can't offer much information on ur daughter. All I can offer is help for you while she fights her battle. They are doing everything they can and this is a battle she has to fight on her own. Keep yourself healthy and take time for yourself as long as someone is with ur daughter. You need to be healthy and strong for her during her recovery. There is no shame in taking care of yourself for her. Hospital food and travel as well as the emotional burden can take its tole. JUST KNOW YOU HAVE A STRONG LITTLE GIRL WHO IS FIGHTING AS HARD AS SHE CAN.... she got that from you. Stay strong and I hope all is well in the future.

[Nawalsaleh in reply to sicksister]

Oh thank you so much sicksister, hope your sister gets well soon.

[sicksister]

Also I'd like to mention that it took 3 and 1/2 months to find the right diagnosis because this was a rare blood disorder. It takes time to rule out the obvious stuff first. And in my experience I've learned that ppl can overcome alot. My sister was literally dead for 3 months until they could bring her back and get her off the machines that ran her body until we could figure it out.

[Jgrosho]

My wife was paralyzed while in induced coma for 2 months. its been several months of long term acute care, physical therapy, She has had several follow up surgerys for her ruptured stomach and ards issues. She has slowly recovered. she still has a ways to go but is walking, talking , driving, caring for herself. its been a year, but daily she is stronger. She is 58 and was in good health before her accident. Your daughter at 21 has a good chance of full recovery.

[Nawalsaleh in reply to Jgrosho]

Thanks alot for your reply,glade to know your wife is getting better.

[Hidden]

Hi, my dad is 74. He had septic shock and was in an induced coma for over 5 weeks. He was in a ventilator. After they took him off it took him over a week to come round then another week to stop talking nonsense due to the drugs. They were going to do brain scans etc. At one point all his organs were failing and we had no hope. He is now in a general ward. Has lots of muscle wastage so needs Physio until he can stand again but other than that he is back to his old self mentally. My point is , don’t give up hope. Everyone is different and your daughter will come round in her own time. The day they were going to do a trachy and brain scan on my dad is the day we walked in and found him awake! I wish her a speedy recovery.

[Nawalsaleh in reply to Hidden]

Thanks, hope your father recover soon.

[Hanban14]

I my daughter was paralysed also. She has spinal surgery complications arose. Needing an emergency tracheotomy. The following week she stopped moving .no movement anywhere. Eventually they tested with EMG and she was diagnosed critical illness myophady and retested later on again she was diagnosed with critical illness polyneuropathy. We are out of Icu after 7 1/2 months . And now on a ward. She is slowly regaining movement although it’s weak. We are waiting to go to rehab and hopefully get her back to baseline. I don’t know if they have tested into these illness. They basically only looked into these to rule them out. At one stage they suspected locked in syndrome It is a long road but no one can predict the future. Do take care of yourself. Pace yourselves. Basically it’s a marathon not a sprint. I hope she improves more really soon . My daughter is 16.

[Nawalsaleh in reply to Hanban14]

My heart goes with your daughter.Thank you.

[tessauk1]

I had Sepsis, MRSA and pneumonia and went into 2 Comas, both grade 3 on the Glasgow scale. My kidneys also failed. I had a 1-2% survival rate. It took about a week to wake up after my Comas. It’s now 3 months since I came home and I’m still recovering. Apart from memory loss, the Coma dreams and weakness in my limbs I’m mostly okay now. Good luck xox

[Nawalsaleh in reply to tessauk1]

Oh thank you, hope you recover soon.