Middle-of-the-night musings:

It is so good to be out of the hospital and back home. My husband was able to sleep interrupted from about 9:30 - 3:30 AM. I just helped him to the restroom and moved him to his chair in the living room, had him take some more meds, and he is already back to sleep. We've done this post-surgery thing so many times over the years, and we have figured out how to work things.

Hospital workers serve their purpose immediately post-surgery, but it doesn't take long before it's time to cut out the middlemen and do it ourselves. With his neurological problems, the hospital staff, everyone from staff doctors on down, really don't know what to do and not to do, and they end up causing him more pain. Their intentions are good, but they tend to not believe I know more about his condition than they do (which is virtually nothing -- including the staff doctors). And they constantly want to touch his foot which is excruciatingly painful for him, despite my contastly telling them "DO NOT TOUCH HIS FOOT." Very crazy-making.

I'm fairly certain his excessive swelling was the result of that; it has started going down now that we are home and can elevate, etc. like we know we need to do. I get it; he's complicated. They have their normal routines for dealing with knee replacements, but Scott isn't a normal case so normal routines have to be altered -- they don't like that.

Fortunately, his surgeon (who we love) understands that and gave me permission to handle Scott how I knew he needed to be handled with the RSD; it just doesn't always get communicated well to the rest of the hospital staff and they think I'm being difficult (until they check with the doctor who tells them to listen to me. LOL!) That's why I never leave the hospital when he's inpatient; I really do have to watch everything they do.

So, note to the future doctors here on this board, if you have a patient with CRPS/RSD, listen to the patients and their family who live daily with this condition and really do probably know more about the day-to-day workings of the condition than you do, and DON'T, no matter how curious you are about circulation, etc., TOUCH THE AFFECTED LIMB. The pain is real, and the slightest touch causes extreme pain and your messing with it WILL result in more swelling which WILL just make matters worse. We know this because this is our normal. Trust us to know our condition better than you do.

His surgeon was great though. He asked us what would work and not work with the RSD ahead of time, and he respected our experience. He forbade the hospital staff to put circulation stockings on my husband (routine) and opted for an ace bandage instead. He didn't require the thrombosis cuffs constantly (torture devices for RSD), so long as we keep the fluids going, the aspirin, get him up and moving every hour, etc. He knows it is a balancing act and that we are really dealing with two conditions instead of just the knee replacement. The frustration is constantly having to re-convince staff at each shift change of all of the modifications for him, and occasionally they refuse to listen.

So, nice to be home. I'm thinking today will be better for him. Physical therapy will start coming to the house starting Saturday, about three times a week.

All the kids are going to be here today, and they are in charge of the food. I plan to just rest and take care of hubby while they do the cooking. We have much to be grateful for this Thanksgiving. Surgery went well. Our daughter-in-law just got a new job yesterday, so their financial woes are about to improve. Our mtf transgender daughter doesn't know it yet, but her mtf girlfriend is about to propose to her today. Her girlfriend has been living with us for about a month now while they get their apartment, etc. lined up, and she is lovely. It is so heartwarming to see their love for each other, and we are so happy for them both. Our youngest son is thriving with this music studies and will be having his capstone voice recital in a few months.

Life, despite its many stresses, has a way coming turning around. The trick is having the patience to wait out the stresses.