and figuring it out.
I have to admit, it feels like being a new mother again, only this time I can’t pick him up. He is, in many ways, just as fragile as a newborn.
He does, at least, understand most of what is said – this can be both good and bad. Insensitive doctors, nurses, techs who think he doesn’t tend to just say anything. This has, at times, left me trying to calm him for hours after they leave.
It took well over a week to get his PBA medicine. Any doubts I had about whether he has that or not are now assuaged. It took a few days being back on the medicine, but he is finally not randomly screaming and yelling, 24/7.
My nerves are shot. I came out of trauma, have never been able to get therapy, and wow do I now realize how much I need it. I have had 3 meltdowns. I don’t have meltdowns. I’m “extremely high functioning”, the one time I did talk to someone, he quickly decided that as high functioning as I am, I cannot possibly have anything going on internally, and certainly not PTSD or “anything serious”. That was said about a decade ago now. I do at least see a great deal more open thinking about mental health in the last decade, and not so much dismissiveness. Hopefully one day I’ll be able to go. I don’t melt down. I can distinctly remember the last time I did. My now 27 yr old son was one.
Things are starting to level off though, and we are working on creating routine. I have kept us both alive for 2.5 weeks. His pressure wound is healing very well – the nurse came today.
I need to find some help, somehow. Times like this, being an introvert can be a hindrance.
I have never before that I can remember, cooked for just one person. I get to do freezer cooking just making what has always been normal cooking! Going from 4 growing boys to just he and I was enough of a change. Made some delicious crock pot Mongolian Beef today though, and now have 3 more meals prepped besides tonight’s supper.
We are both catching up on sleep. He has never, ever slept well. I do worry about not using his CPAP, but he has to use a full face mask and that isn’t ok right now, as he can’t take it off when/if he needs to.
He has improved though! He turns his head whenever he wants to, and can now lift his head off the pillow and some days, his upper torso! He is moving his left arm more regularly every day. He moves his left leg. His swallow reflex is coming back, inconsistent as of yet, but it is better than no swallow. He has rolled himself over twice now from where I’ve put him -from a side to his back or to an angle, even with wedges behind him to keep him on his side.
We do PT exercises most every day, 3x a day, unless one or both of us are just too tired or weak. I have multiple herniated discs and other skeletal issues, and he is a big man. Some days, I just can’t. I massage him once a day, they said we need to wake things back up. I have seen more improvement since beginning that than I thought possible so quickly. I often use Voltaren gel when doing so, as he is very tense/tight in areas. I can’t help but think the slight tingle of the gel may be assisting.
I am making myself a goal of writing here at least 3 times a week. I still need to finish my recording of things that happened. I don’t want to let much time slip by. I am already forgetting names.
The Time We Have Been Given 