Make sure you stress to him how important it is for his recovery to take it easy, this is not a broken foot that you shouldn't be walking on!!!!:):) I was only in step down for 3 days b4 I was released, I'll be praying for you guys:)
We had a little talk about that tonight. It will be hard when he LOOKS ok from the outside and no one knows what is going on inside. I've shared with him a lot of what I've read on here and it has been comforting to him.
Try not to worry - wow You're very lucky he has his motor skills intact. You'll find, if you hang around here long enough, there are plenty of people who've had a burst, didn't turn out so lucky.. I met a few of them in PT and OT while I was recovering.. With that in mind, I can give you an example in me.. I pulled my arterial line out my first night, spurted blood everywhere, including the ceiling and everyone around me...nearly killed myself, don't remember a thing and had no clue what I was doing. Apparently, during one of my angiograms, early on I sat up and started cussing like a sailor and insisted it was time for me to leave and started pulling my stuff out, trying to get out of the bed and told them my to bring my car around I had to get back to work, "where's my phone, where's my laptop, get me the "F" out of here" stuff like that." My medical team was thrilled, because it meant I was coming around (apparently I'd been out of it for 5 days and they were beginning to worry whether I'd make a significant recovery or not) I don't remember any of it, so rest assured, it's probably part of the deal.
Don't want to be flip about it, but sometime take a walk around your husband's ward or floor, see how other folks are getting along. I'll bet you'll be thankful and realize what a gift you have. Also, stick around here. The people in this group are some of the most wonderful, patient, gifted and compassionate survivors, relatives, friends and colleagues you'll encounter. It's truly been a godsend to me in my recovery.
I agree with the recommendation to keep a journal or video or some log of his recovery....something for you to laugh about later, but also to see the progress. It's going to be a long haul. Remember, it's a marathon, not a sprint.
Good luck and best wishes,
Cec
The things that you are describing sound exactly like my husband. He was awake for almost 7 days with a half hour of sleep here and there. During that time, even with all of the drugs he was wild. He told me that he couldn't be off of work more than a week because he'd need a doctors note. Then he was fixated on contacting work to set up a sub. (He's a teacher)
The hospital staff reminds me every day how lucky we are. They said that they MIGHT expect this kind of recovery with a grade 1 or 2 bleed, but he was a grade 4.
The EVD (or brain drain as I like to call it) came out today! Thankfully he did not require a shunt.
I've come home for a few hours to do laundry and have some peace. I may stay home tonight. It will be the first time in two weeks! I have so much to do. I want to create a smoke free environment. We were both smokers. I've been taking Chantix. We usually smoked outside, so there are ashtrays out there to deal with. When it was bad out we would just go in my bathroom and turn the fan on. That room needs scrubbed down. I need to put my coats in the dryer with febreeze and dryer sheets to lessen the smell until I can get them cleaned. As selfish as this sounds, it is my worst nightmare to try to quit smoking during the most stressful time of my life. He means the world to me and I'd do anything for him, so if this is what I've got to do, so be it. It just sucks. Because I don't have family support during the first few days cigarettes were all I had.