For those out there that this happened to, I ask a question.
During the times that you were aware and participating. Did you need/want the people with you to keep you stimulated?
I feel like when Scott is awake and aware I should give him full attention.
But is it ok to just sit and “be”?
Is it what may be better for him?
Can he speak, answer, respond to questions? How alert is he? Is he sleeping a lot and rarely ever awake or is he up most of the day? How medically fragile/stable is he? A lot just depends on how well he's doing.
He is awake on and off about 6 hours a day. He still has a trach, so he does not speak. He has tried mouthing words.
During these times I play music, read to him, do range of motion.
Since he can not tell me, I usually pay attention to his eyes. If he closes them, I stop.
I just wonder if I am over stimulating him.
Early on in my AVM rupture I am told I was easily over-stimulated (my biggest lingering deficit is my memory. Many Neuro ICUs have mandatory quiet times for this reason. At this point in my recovery I can drown out stimulus like I used to. When you say he has a "trach" do you mean a surgical incision or breathing tube? If he has a trach they can put on a speaking valve as long as his respiratory status isn't compromised (this can be assessed by the medical team).
He is still on the ventilator. He is being weened off of it now.
I can tell you from experience (both personal and professional as a former ICU nurse) everything is done at a pace and for a reason. I had my initial AVM rupture with initial hospitalization and rehab and have absolutely no recollection of any of it (even though my family and friends will tell you I actively participated in conversation and rehab). I assure you the nurses you interact with will understand the personal implications for both you and Scott. The reality of this is that the brain does not heal in the same way (or pace) as other organs in the body. I am not saying this to discourage or worry you: I am speaking from my own experience. I suspect your family and friends won't know exactly what to say to you (this was the case with me and my Mom and girlfriend are both nurses). Don't interpret this as them not caring because you'll likely see both ends of the spectrum (people being overly-comforting and people being distant). I wish you and Scott the absolute best in what is certainly a very trying time.
Hi DJ, good call on stopping if he closes his eyes. Sounds like you are doing very sweet and loving things which are great - Mommy did this for me but I don’t really remember them. I do recall being horrified by visitors and thinking I had to visit w them - I was talking yet either - I was just confused. I had Mommy unplug my phone and Daddy send people - who were do gracious - away. Maybe you could ask him and gave him blink his response. Maybe he just wants you to sit and hd his hand. One of my favorite memories is of a nurse who sat with me for a few minutes while I watched TV one night - it was a quiet place and he got his charting done. But just sitting added some normalcy that was comforting. Congrats on making it through your first week out of the ICU!
DJ, what great questions! Post surgery for me? I told everyone before entering the hospital that there's no need to come sit next to me because I won't be in a talking mood. And I honestly don't remember any stimulation of any kind. Nor do I remember most of my hospital holiday. A blessing I'm sure. But if it somehow gets me home sooner then everyone show up at the same time. I didn't tell very many people beyond immediate family. So I only had a few people. For you? You know your husband and what he would prefer. So do what your heart tells you. Everything you do, whether her realizes it or not, will be a benefit to everyone. Just be patient. He, you, and your family will get though it. Patience always.
I was trying to think back . I dont remember much of the first week after my bleed. Just snaps here and there and all my family were with me on and off that week until i was moved to a neuro unit. When they finally found the avm and said no treatment as this was1979 i had to cope qith a weeping father! But as the weeks went on and my headaches etc improved i looked forward to visitin time. My mum used to come and stay most of the day. I slept when needed. We stayed in 3months then quite different to now. Just be there you dont need to talk all the time.
FAST SPEECH AND OR LOTS OF PEOPLE AROUND ME AT THE SAME TIME AND I FELT OVERWHELMED; THOSE THAT SAT QUIETLY OR HELD MY HAND GENTLY ONLY SPEAKING QUIET WORDS OF COMFORT FOR ME WERE BEST. LOVING TOUCH AND GENTLE WORDS WERE FAR BETTER THAN TOO MUCH NOISE. I HOPE THIS IS OF HELP. ALL THE BEST.