I got no strings to hold me down, to make me fret, or make me frown. I had strings but now I’m free, there are no strings on me. Nothing ever worries me, I’m as happy as can be. I want the world to know nothing ever worries me! I’ve got no strings so I have fun, I’m not tied up to anyone. They’ve got strings but you can see, there are no strings on me!
Today the doctors decided to take Johnny off TPN completely. Normally they would never think about doing such a drastic maneuver, but because we are here at least until next week, they felt they could take a chance and see what happens. Hopefully nothing. Johnny’s weight has increased everyday — and it’s not water weight either. His counts are coming up — his ANC is 500 and platelets have held steady. He’s eating small meals all day long and doing PT.
Yesterday…
All morning long we plotted our adventures for when Johnny was free and unhooked. We walked ALL over the hospital — on our way back to the room Johnny said, “Since we walked so much today, I think that counts as my PT”, and just as he finished his sentence the PT nurse came around the corner. The cool thing about PT is they never take no for an answer. She took him up to the PT floor where I watched him play basketball, work on his balance and building his leg muscles. If he’s standing in front of you, he looks ‘healthy’ but once he starts to walk, you can tell something is up, his PT nurse said he ‘hides it well”. He cannot get up from a sitting position without help, but hopefully that will be fixed by the end of the week.
The lung CT is scheduled for Wednesday. The ID docs came in late this afternoon to say they want a CT of the gut and sinuses too, just to make sure there isn’t anything happening in either place before they start to cut back on the meds. Because the gut and sinus CT were just added today, they might have to be scheduled for another day — unless they can knock it out on Wednesday. I hope that makes sense…
TODAY!!!!
Joey comes home tomorrow and Johnny cannot wait!!! The boys have been talking to each other every night — no one makes Johnny laugh more than his big brother. I bet there will be a HUGE improvement in Johnny’s spirits and health once the boys are together again.