When I arrived at the hospital, Mike gave me the run down of any changes in meds and generally how to take care of Johnny. When I left 7 days ago, his hands were just starting to turn red and he could stand with assistance. The past week was a different story -- Mike had to lift Johnny to use the restroom and bathing was a thing of the past. I cannot describe how bad Johnny's hands looked -- the only thing I can compare them to is a burn victim. Since this is at least the third time Johnny has been extremely sick over the past 90 or so days, his strength and immune system ain't what it used to be and now we are battling bed sores. oh goody.
None of this has anything to do with Mike's care taking abilities -- he just happened to chose a bad week to be here. As Mike was giving me the down-low on Johnny's mouth care, he was also showing me. I can't begin to describe how gnarly this stuff is and won't go into any sort of detail except that when Mike was showing me how to clean Johnny's mouth, I thought to myself , "Well. I won't be eating this week..." that's how gnarly it is.
There was a moment when I thought I couldn't make it the whole week. Yesterday I hit a few rough patches but luckily Johnny seemed to be somewhat understanding. The planets must be in perfect alignment or something because today was a great day. My goal for the day was to clip Johnny's nails -- gross, I know, but for the past week and a half we were terrified to touch them and cause any unnecessary pain. So I recruited our nurse to help me with a quick manicure -- Johnny was less then stoked about the idea but it went very well -- so well that I thought even bigger than just manicures -- I was thinking bath time!
Over the past few months Johnny's muscles have atrophied -- and so have mine. That said, the first time I tried to pick Johnny up I thought "oh shit this kids heavy...", followed by, "oh shit, I'm outta shape...". I had to have a heart to heart with Johnny and we agreed I would help him as much as I possibly could, but I would need his help as well. I could tell he was very nervous about the possibility of walking, let alone getting in the tub -- but he did it. We did it. He enjoyed his tubby and soaked for about 30 minutes -- wire/tube free.
As Johnny was soaking, I was trying to get a feel of what was going through his mind and maybe have a small conversation about anything. There was a slight pause and out of the blue he said, "I want the Hi-C orange juice boxes... and some of that Hawaiian punch stuff. Oh and some green Gatorade." So that was what was on the kids mind -- what to drink when he's out of the tub. I placed the order with Mike's mom and in no time, his drinks were here and Johnny was having his own 'taste test'. I'm not kidding -- I can't keep the cups full enough or cold enough and he just goes from one cup to the next. They are lined up according to preference, but most of the time he tastes everything just to see what he likes. So far it's everything. Later, he said, "I guess Grandmommy forgot the Sunny D" -- and I told him it wasn't on his list (I wrote it down to make sure I got his order perfect) and showed him. He shrugged in a way that let me know he told me, but I didn't write it down -- (basically, I was full of crap). He also had TWO Popsicles -- not the whole thing, but two flavors none the less.
All in all I think the day was a huge success even with the few minor bumps in the road -- and pray tomorrow is just the same if not better.