Hello All.

​

Just here for some advice.

​

My husband (39yo) had a brain stem stroke on July 28, it was quite extensive and prognosis was very grim at the time. He was in a coma for about 5 days. His mother and I were allowed to see him, and on the second occasion I saw he had opened his eyes, and I tried to communicate with him, so I asked him to blink for me, which he did, and to push down my hand, which he did. A few days after that he was able to move both hands and responded to pain, which is when his neurosurgeon decided to recommend surgery to remove the dead cerebellar tissue that was pressing against the brain stem and thus give him a chance for recovery. He did poorly for a few days after that, so they did a CT scan and found a brain bleed.

They did a ventriculostomy to drain the fluid, and after that I was able to see him again. He eventually woke up, and I was able to communicate with him again, I got him to track my finger, and follow a couple of simple commands (open/close your eyes). I also got him to push down my hand again. The next day a neurologist saw him and found that he could move both hands and even wiggle his toes, nod and shake his head.

But then things started to go awry again. His temp kept going up and his blood pressure and he got hiccups, which they managed by giving him propofol. During this time, all the gains he had showed over a whole week were gone. He is in a persistent vegetative state and will not respond to anything. A couple of weeks after we got to see him on FaceTime, and I thought I got him to respond to a couple of commands, but we weren't sure. The nurses reported that he was not responding to them at all. I interpret this as he's depressed and won't respond to them. Or maybe I'm fooling myself

What I would like to know is this: Is this it? Why was there improvement and why has that improvement been lost? Could it return? One neuro said it might, see what happens over the following 2-4 weeks. A nurse seems convinced it was just random synapses firing, another nurse said it was all reflexive (even following commands???) and an intensivist (who has seen him basically every day) said basically the damage was probably continuing post-stroke. They have done an EEG on him and found he has an awareness level of 5-6 out of 8.

I don't know what to think now. I would like to hear your opinions. Ultimately I know that this is probably it, but I just want time to visit him before I say goodbye. It's just messed up that I cannot visit him every day.