Today was mostly another looooong day in the hospital. On several occasions Josiah's tolerance level for being stuck in bed reached a point where he was miserable and didn't really want to do anything to make himself feel better. However, there were also some cool moments:
1.) To spice up his wagon rides today, Shelly created a scavenger hunt for him. She taped 6 envelopes along the PICU corridor walls with his name on them. As we rolled him around, he had to watch for the envelopes and find them. When he did, we'd open them and read a card/note to him, and there was a small prize (crayons, lollypop, puzzle, etc.) in each. He enjoyed it and Shelly is already planning something more elaborate for tomorrow.
2.) Tonight after dinner I asked Josiah if he wanted to do a puzzle...previously he's said no but this time his eyes lit up somewhat and he nodded yes. Using a hospital rolling table arranged over his bed, we opened a 100-piece puzzle and began to work. I could see his mind working as he positioned the pieces, and he flashed repeated thumbs up as we worked together and made progress. I've included a picture of him working the puzzle.
3.) Probably the coolest moment happened tonight when we held up a mirror so he could see his neck without a trach for the first time. He stared at the mirror for a few seconds, then shot his arm up in the air with a big thumbs up. I think it was a strange sight for him, but one that he's excited about. I've also included a picture Shelly took while this was happening.
Josiah is getting better at communicating with us (or maybe we're just getting better at understanding). As you probably know, he can't say anything due to the tube through his nose that goes down through his vocal chords. The sign language he learned several years ago (a necessity because he couldn't talk at all then) has come in very handy, and he's also developed a system of pointing, thumbs up, etc. to help us know what he needs. For several days we've noticed occasions when he fidgets and rubs his legs together...usually happens at night and keeps him awake. We've previously asked him if his legs hurt, and he shook his head (no). About 4:15AM this morning I thought to ask if his legs itched, and he nodded yes. I sat beside him and rubbed my hands up and down his legs, and within 3 minutes he was fast asleep. His nurse brought us some lotion, and we've applied it several times today to his legs...it has helped his comfort level a great deal. We later found out that some of his medicine is probably drying out his skin.
Before closing, here's a specific prayer request...it is very important that the tube in Josiah's nose remain in place until it's time for them to take it out. He has done a great job leaving it alone...however, at night when he's back on the vent (and the tube is connected to other tubing) and he moves, it starts to pull on his nose tube. Last night there were 3-4 times the respiratory therapist had to push it back in...Josiah does not enjoy this at all. At one point she even wondered if we needed to re-tape and re-position it, which would require him being sedated and paralyzed while they do it so that he doesn't move at all. In the end, she ended up adding a single piece of tape to help stabilize it. It's done very well today, but please pray that the nose tube stays stable tonight while he sleeps (and wiggles). Only three more days until his bronch on Wednesday, and if all is well at that point they'll downsize to a smaller tube.
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