FIRST STEPS

On Thursday morning I was back to rehab early. They decided to stop running continuous feeds an opted for bolus feeds to be given several times per day. This meant the head of the bed didn't need to be up at 45 degrees all the time but could be flat, safer and more comfortable for Danny. The side rails were padded now as well. Danny was tossing and turning even more, turning all the way around in a circle and rolling, getting up on his elbows and trying to bring his knees under him. A feed tube continually attached would have been impossible. I met Harold, a huge, strapping fellow who was Danny's aide that day. He would prove to be one of my best inspirations for hope. He had loads of experience in the medical field and with brain injury patients. He told me ahead of time what phases I might see, physically and mentally, and gave me encouragement. He and I had our hands full for sure. Without a male aide there I don't think I could have controlled Danny myself.

In PT Danny was stood up at the parallel bars over and over. His body slumped and he wouldn't hold his head up. Loudly they would repeat his name and tell him to hold up his head. He would for a few seconds, then it would go down. The periods of standing were only for a few moments. When they would try to back him out in the wheelchair from between the bars, he would grab and hold on to the right bar with his hand and stubbornly refuse to let go. 

In the afternoon session they took him to the bars again and stood him up. That was the goal for now...increased toleration of standing. Suddenly though, his right foot moved forward and he took a step!! I was beside myself and the therapists were praising him. It was difficult for him to move the left foot, so the therapist pushed at his heel with her foot to help it along, and then he stepped again with the right foot. It was amazing to be able to witness his first steps. I felt such love and my heart just swelled with pride knowing he was pushing himself. He was near dozing much of the time and tired easily, but Danny had drive...and where it once was an extreme stubbornness driving his OCD, I suspected somehow that the same overwhelming stubbornness would perhaps be the power that could pull him through this as well.

Danny was rarin 2 go 2day, stood 8x, took sum STEPS w/help!!!!!!! No more continuous feed so head of bed can b flatter n more comfy 4 him-bolus feeds now. Will let trach close soon. Still wiry in bed n gettin on his belly n on elbows, n knees too almost! Thank God for 1 to 1 supervision he's getting. 

Facebook on December 30, 2010 at 5:24pm

awake since 4am with my mind racing. gotta pack up and get to tamaqua to work a 12 today. praying the new year brings good things for everyone. wont see Danny today n maybe not tomorrow, but i saw his fighting spirit yesterday n that gives me hope. I LOVE YOU SWEETHEART!!

Facebook on December 31, 2010 at 6:22am

ARRIVAL AT GOOD SHEPHERD

Today danny goes 2 Good Shepherd! I spoke with his trauma dr who now says danny has a good chance of significant recovery, and is medically stable, breathing on his own etc. And the nurse liason at rehab says things look good n will help me through the process of obtaining equipement he will need for coming home.

12:30am...turning in now. Played some games with Nick and talked with Barb and had some fun and laughs. Up early tomorrow to stop at Walmart to pick up a few easy-fitting clothes for Danny to add to what his family got tonight, then off to the rehab to tour and meet his therapy team, and of course give him a big fat kiss cuz its been since Christmas that I saw him...

Facebook on December 29, 2010 at 12:34am 

WHEN DANNY WAS RESTLESS LAST NIGHT THE NURSE ASKED HIM IF HE HAD PAIN AND HE SAID NO!!!! granted it was a cross btwn a rasp and a whisper, but he spoke!

Facebook on December 29, 2010 at 2:08pm

All day @ rehab w/Danny. The ppl R fabulous! He got sum rest n he's still extremely wirey when awake. Trach is capped, O2 sats R high breathing thru his nose, and I helped w/ his physical therapy. He STOOD UP w/ coaxing n of course help!!  I couldve sat there all night n just looked at him. I learned info on help 4 when comes home, n turns out Bayada Nurses, my employer, is involved w/options 4 home help/care thru the state!

Facebook on December 29, 2010 at 10:06pm 

Danny went to Good Shepherd on Tuesday, 25 days after the accident. I couldn't get there until Wednesday, and I was awestruck from the first moment. I was welcomed, made comfortable, provided with literature in a notebook, phone number lists, introductions to staff, offered counseling with care management if needed, and told to help myself to coffee or snacks in the cafeteria on the brain injury unit any time I wanted. They stressed strongly how important it was for me as Danny's significant other, to participate in his therapies and rehabilitation. They welcomed me to be around day or night and support him as much as I could. I was more than happy. Danny had an aide in the room with him at all times. They were friendly and worked quietly at the bedside on their computer documentation while he slept, and they were on the ball keeping him safe when he was awake. There were no restraints used at Good Shepherd, so Danny was a free-wheeling flurry of activity. He continued the movements he had done in ICC, but stopped bringing his legs up into the air. Instead he rolled tirelessly from side to side, back and forth, and reached and grabbed side rails trying to pull himself up. When he rolled to the side he did so swiftly and with force. Whom ever's side he rolled toward, the aide's or mine, we had to brace against him for ten seconds or so until he relaxed from pushing...then on he went to the other side. It was ceaseless unless he was asleep. I was worn out and hurting by the end of the day. I got a break to go meet with the care manager Susan, and was filled in on lots of information. She asked all sorts of questions, about our family, but our home mostly and went over what handicap appliances or services might be needed at discharge time. She got paperwork established for state waiver programs that might pay for things medicaid may not.

Danny had physical therapy while I was there. I was so impressed. This little feather of a woman about my age, Tracy, came in, sat him right up and transferred him to the wheelchair, but not before telling him over and over to "STAND!"...and he did!! It was brief, but he did it.

In the wheelchair he had no ability what so ever to support his own trunk. There was a seat belt, but also a strap around his chest and under his arms. He kept scooting forward in the seat, even though it was a tilt-back chair...and they kept boosting him back. He moved his legs side to side without resting, putting them almost out over the armrests. He flailed his arms. He slumped forward against the chest strap. I could hear his heavy puffing coming through around the trach stoma. He didn't say anything or make noise. He just had a panicked expression, which alternated with a blank stare. After being wheeled into the gym, he was transferred onto a padded bench to attempt to sit upright. He was not able. His chest came to rest on his upper legs and his arms hung limply with his knuckles almost to the floor. They said "Danny, sit up! Sit up straight and tall" He suddenly would make a spastic movement upwards, uncontrolled in any way, much like a young baby who is learning to control his head and neck. And then down he went again. The session was short...all of fifteen minutes. Thats what they would be doing. Short sessions in order not to tire him or lose his attention.

This constant movement while in the chair and bed would continue for days...weeks really, but in a lessened degree and in different forms. His sleep cycle became reversed though after a day or so, which presented a problem to therapists trying to work with him and needed him alert as possible. Often I sat for hours while they could not wake him for therapies, so they stretched him in bed even if he was sleeping. Good Shepherd's staff was full of love and patience, but also determination. It was easy to go home feeling comfortable with the genuine love and care he was receiving.

up early for a change. Gonna look up some info on the computer and then get ready to spend the day at the rehab again. Its so exciting to see the work they do at Good Shepherd!!

Facebook on December 30, 2010 at 8:06am