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!!
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