2020 10 03 week review

 2020 10 03 Saturday Franciscans Day 5.

The photo is of today ... Saturday ... Day 5 of rehabilitation. The photo was taken by a hospital worker walking down the hall collecting the bags of used covid required gowns. It looked as if he pushed the button to take several photos. What It looked like and what truly happened were not the same. There was only one picture for what seemed to be a three minute event.

The photo however captures the true feeling of the place.  It is somewhat foggy and blurry, everything around us is blurry and almost colorless or colorblah. It is lonely. The two of us are here but we cant even see each other through these damned masks. I see myself here adjusting his mask, making sure it covers his nose so that tommorow they allow us in the hall again. When I was young my dads car didnt have seat belts. Alexs older brothers Dad "Ed" had seatbelts in his....now Alexs Dad "Ed" needs to have seat belts, a box of face masks, hand sanitizer, disinfectant wipes and a box of latex gloves at all times...

I cant imagine what Jordans kids will witness.

Tuesday:

we were transfered by ambulance type vehicle to Franciscans for Rehabilitation.

Alex needs rehabilitation in order get all of his functions back.

as of Monday he is unable to sit, stand, move his left arm or leg, Walk, talk, nor focus.  He began to show signs of it all, but has not had the strength nor ability to do any of it alone.

We spent Tuesday settling in. We spent Tuesday in the shock of change and in the shock of the place that we have just entered into.

We came from state of the art facilities and are now in a building that is definitely "not". We do our best to put place aside and focus on the people and the teams.  It is extremely tough to do though...but we need to see what these teams are about.. We pray that it is all about the people here....because the building definitely needs help.

Wednesday:

We met all the teams. Bela meets half, I meet the other have. The goals are promising

..we hope to work hard and get things done. Alex is stable, he is hot and sweaty which is a big big problem, but he lays on the bed hoping that mom and dad have made the right decision in coming here. While here the goals are to fine tune his feeding, reduce his medicines, transfer all foods and medicines from J to G to finally some real meals that can be chewed and swallowed, and all types of therapies. The goal is to see him walk, kick, throw and ride his bike again. The goal is to hear him talk amd sing again. Wednesday was all about getting to know Alex.

His stiching is still not healed, they think a month or two, we cover every now and then because he scratches at them.

Thursday:

Alex worked with Dad and the PT and the OT. We made the attempt at getting him comfortable with them. With me Alex sat bedside several times. He looked like he was in pain and he hit the pillow really hard with his right hand. I think that Alex is showing his aggression by hitting the pillow. Alex ia not yet talking but he is laughing at mom amd silly stuff that I do. The therapies are starting slow with intent to progress as time goes. Currently Alex is being a hard ass and stuffs his head in the pillows when he sees the therapists coming.

Friday.

Last night was tough. The walls are paper thon and we can hear everything around us. Alex woke several times through the night. He is medicated and tube fed throughout the day and night, so nurses come in and out of his space often.  We have a schedule and a weekly plan of reducing and eliminating medicines and reducing and shifting feeding so that we can get closer to normal.  Today Alex had PT and OT with the therapists. I stayed back to see if they would succeed alone, but they are not there yet. Alex gave them all a hard time and didnt want to cooperate.

Im the afternoon the therapists brough a wheel chair and took him for a ride. Bela and Alex shared some laughs up and down the hall.

Alex was happy in the afternoon and toward the evening. He and mom had a successful afternoon.  By the time that I got to Alex at 830pm he had his night medication and was ready for sleep. I was able to get him to laugh at a few toys and play a few sillys before he fell asleep.

Saturday.

It was a good morning. Alex woke up less cranky than yesterday. We increased feeding and he seems to be tolerating it.

We had our routine morning "Portuguese Shower" (bedside towel wash). We brushed our teeth and put Jorge Ferieras "Tiro Liro" on the cell phone and got to bedside stretching. We worked OT

..the arms and hands, lifting, hitting, touching our nose and grasping with both hands. We worked these for about 1 hour 15 minutes...with the music he didnt even know.

After OT he had his noon medication that puts him to sleep for an hour. Once awake...i stretched his legs a little, sat him up bedside 3x for a few minutes at a time with lay down breaks in between. We attempted several hugs and then 3x standing hug for about 15 seconds each time. The standing works him so hard that his legs shake and he looks uncomfortable.

After about half hour of hard work he was able to get pushed around in his wheel chair.  He was all happy until he had to put the mask on. Learning is tough...changes suck...learning or relearning in a changed or different environment sucks even more.