“Let’s Get this Show on the Road”

These were the words that sent Angelique and I into chortles as we left the hospital last night. They were the words Jon had said just before we left for the night. He had had a big day. His Aunt Peg and Grandmother were among the visitors and Peg and Carol had massaged his hands and legs and given him quite a physical therapy workout. He was showing off his ability to move his hands in big concentric circles when Angelique and I walked in for the 2:30 visit. Later, when just Angelique and I came for the 5:30 visit he was sitting up in his chair again and wanted his hands, arms, and shoulders massaged. Having never seen him quite so active we could only imagine how sore his arms and shoulders must have felt. He was full of the itches, too. One impossible spot to reach was the center of his chest--with the turtle shell brace that’s impossible. Then he complained of his wrist bands being too tight. Angelique tried to show him she could almost get 3 fingers in between the band and his wrist but he insisted. He asked to have the bands cut off. When she replied, “No, I can’t do that.” he said “Yes, you can!” with that expression of ‘all you have to do is pick up a pair of scissors, silly.’ We laughed and explained that the nurses needed to scan his bands when giving his medicine, etc. but that was definitely not a satisfactory answer. It was shortly after, that he banged-quite literally- his wrist brace on the table and said, “let’s get this show on the road!” referring to a promised and much delayed bed bath. Hence the chuckles when we left his room saying, “The old Jon is back!” and then told the nurse how impatient he was getting.

A new problem has arisen for Jon. He had had so much trouble eating that they decided to give him a barium swallowing test on Friday. He was given a thick liquid containing barium which outlines the esophagus, stomach and intestine. X rays were taken of his throat and stomach while the barium mixture moved through them. Unfortunately, he failed that test so food is still out of the question for a while.

We will definitely need help dealing with the highs and lows of this journey. Today, as we should have guessed, would be a low. Carol has as much trouble, if not more than I, in dealing with Jon’s lows. She has worked so hard with him on her own physical therapy program and has been so proud of how far he has come. She has made a chart of all the things that he may be trying to convey for those people who have trouble reading lips. It is terribly hard for her to get up and get going by 8 or 8:30 to make it to the hospital in time for the 9:30 a.m. visitation and she usually stays until noon, sometimes 2:30, so when Jon is feeling down as he was today she is heartbroken.

He had a nurse today who felt that he just wanted pity and she was pretty forthright in telling him how hard the staff had worked to get him to the point where he is and pretty much indicated to me that she had implied he had a lot of gall to lay there and want to be pitied. (It has been pretty much a daily routine for him to insist that he wanted to go home with mom, or wanted all his equipment off, and even saying he wanted to die--the last statement being new to me because I understood that when the last time he was asked that question point blank he had said “no.”)

So, what we’d like to say to Jon is “The ball is in play, let’s keep it moving!”