Keep the Faith

[EdinCat83]

Hello All,

This forum has been so important to me in the last few months, following my mums hypoxic brain injury due to cardiac arrest in June this year.

Just wanted to share progress in the hope it gives others hope that no matter how bleak things seem, there is always hope. Hang on to the hope.

Mum was in an induced coma for 6 weeks whilst the doctors tried to manage seizures (new super refractory status epilepticus). She was then in unresponsive wakefulness (vegetative) mode for 8 weeks. Doctors told me she would remain like this forever and that her age (67) and weight were against her.

2-3 weeks ago she started to respond to questions with nods and head shakes. Consistent. She knew who I was. She knew where she was. She wanted to see my dog. She remembered her mobile phone. She wasn’t in any pain (a relief). She had been aware for some time and not able to communicate. She nodded in response to these questions. She shook her head to others. She can understand questions in English and Welsh.

A week after the nods. We got words on command. “Hello,” “I missed you “, “ thank you” , “pain in my back” and she said my name. She also told me the other day she was “shattered”.

Still a long way to go. She is still weaning from vent (hence the shattered comment) but doing well. Speaking valve in 6 hrs a day. I know that we are still in the woods but we are a few steps forward toward the light.

Earlier days were bleak and I kept hope when everyone told me there was no hope. Some people on this forum helped me with that and I remain very grateful

thanks too all on this forum for their advice and guidance. Whatever happens I am so proud of my Mam. ❤️

[rbomb83]

hi Cat, how is your mum doing now?

[EdinCat83 in reply to rbomb83]

hello. She is doing really well. Off the ventilator for almost 4 months. Still has a trachey (she had periods of vomitting - much better after they moved her rig but not completely vomit free yet). . She is speaking in sentences now and she can read, tell the time, count, days of the week etc.

The main issues atm are improving her coordination / movement (it is much better than it was). But she is still pretty imobile. She still has bad epilepsy but controlled with drugs. They are currently weaning her off Phenatoyin so she can go to a rehab centre next. She is also currently experiencing delerium quite frequently and coming out with paranoid stuff and convinced she is going to die and not come out of hospital because “they” have told her! Reassurance works hope it passes awful seeing her so upset and confused and always around dinner time

Thanks for asking x

[rbomb83 in reply to EdinCat83]

Hi Cat,

Thank you so much for sharing. I have a very similar situation with my dad. He was under a cardiac arrest for an unknown amount of time in the hospital. They are claiming 3 minutes but his brain damage is profound.

It has been 48 days today since his cardiac arrest. He is 58 years old not a smoker, drinker and he has his brain stem reflexes intact. He can cough, yawn, and he opens and closes his eyes, blinks, his pupils are reactive. His CT is unremarkable, his MRI shows very mild damage, they say it’s good.

he is in the Neuro ICU and they are moving him down from the ICU to the step down unit where he will recieve less intensive care. He is breathing on his own already and got the tracheostomy and peg surgery last week. His organs are healthy but he has an anoxic brain injury. He has myclonic jerks and periodic discharges showing on the EGG. He used to be having seizures though and it slightly improved.

he is still on three different anti seizure medicines and they plan to continue but ween off the dosage. He did develop a blood clot out of nowhere on his right arm.

They are saying to just give him time. I wanted to know how much time do you spend with your mum each day and what do you find are the best activities to help her? Also when her CT and MRI are good, did they not show any damage at all?

Another thing I wanted to maybe suggest is HBOT, hyperbaric oxygen therapy. I’ve heard that it can help people with anoxic Brain injuries. Best of luck! I’m hoping and praying for your mums recovery.