On Monday in the PICU we really got the ball rolling! The boy had been labeled as a fall risk days before they let him stand because he was suppose to not be able to walk on his own.
In the wee hours of that morning he called the nurse’s so he could get up and visit the facilities in our presidential suite….the army showed up. One person to hold his arm. One to stand behind him. One to move the IV poles. And a fourth to guide the tubes and wires. It was excitingly comical. He pretty much stood up wobbled once and went walking on his own. They learned after that….. no army needed. And soon realized all those tubes weren't really needed anymore either.
The rumor swirled that we were going to be able to head home soon. How cool was that?! One week from the start and we were already getting to go home soon. In the storm of things i was told in those first few days, going home soon was not one of them.... The boy was overcoming obstacle after obstacle. Dear sweet me….I didn't catch that soon meant TOMORROW. I blame the lack of sleep for this too. I am going to use the excuse until I can successfully pass off as senile.
Tuesday 7 AM. The grandma and the boy are up and ready to go! Waiting ever so impatiently to get the all clear. The grandma would walk to the door, lift the screen and peer down the hallway...then pace back and sit down. The boy just wanted real food. He listed all the places and things he wanted to eat. There was the flipping through TV stations, walks and marches around the nurses station, sitting and then sitting some more.
After eight days, eight doctors and eight hours of waiting…. We were home in time for dinner!
The boy was put through more tests in those 7 days then I think I could even remember. Between the transfusions, plasma, blood work, biopsies and x-rays he kept right on going and proving them all wrong. He was not going to be in that hospital. He will not have to go through all the therapies that they originally prescribed. He will adapt and overcome. He came to grips with the severity of what happened pretty quickly. I let him ask questions and didn't overload him with the gory details. He said he was sorry...i don't know why. He says he didn't mean to scare me or worry me. I told him it was all in the job description. Within a few days after his release from the hospital he was fully aware of the miracle that he is. He understands that he has a very real disease that can never be cured. But what that is…..what we still don’t know.
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