Plex days are hard days. Apparently when they extended Bella’s plex to a 6th and 7th treatment, they did not extend the order for the IV team to do the early morning lab work. You should have heard Bella question the poor nurse who came in to draw her blood! She was sound asleep but that didn’t matter. When that nurse tried to stick her without first numbing the area, Bella whined loudly and asked if she was from the IV team. We sent her away and said only the IV team is allowed to poke her. About 45 minutes later, a girl from the IV team did come in but unfortunately her j-tip (the numbing rocket they use) didn’t work well enough because Bella still felt the poke. Poor baby has so many bruises on her hands and arms from all the needle pricks!
We got up and ready for her PT session. Bella was ready to work today – very motivated from yesterday I think. PT put her on the stationary bike first. Bella did about 2 minutes there and did really well but was getting very tired at the end of the 2 minutes. She walked with the walker from the bike over to the mat (about 30 steps or so). PT put ankle weights on her and attempted to play standing kick ball with Bella holding onto the parallel bars. The ankle weights made that a bit too hard plus I think Bella’s muscles were fatigued from yesterday. She sat in her wheelchair and played kickball instead (with the ankle weights on). PT wanted Bella to do some work on her hands and knees on the mat but Bella was not able to support herself that way. Instead she laid on her stomach, supported herself on her elbows and hung plastic monkeys from a little plastic tree. I’d say today’s session was about half as successful as yesterday’s. She tired out so quickly and we hadn’t even gotten to plex at that point!
Bella is getting very good at rolling herself around in her wheelchair. She finally has enough upper body strength to last about halfway from the room to the therapy gym on the same floor but in a different tower. And she seems to enjoy having some control in her chair to roll herself around the room.
The plex nurse (another new one today) came at about 11:30. We were expecting her between 9:30 and 10. This treatment is the sort of thing that you dread yet want to get over with so we were not happy about waiting. However, Bella handled it like a pro once again. She didn’t get sick at all today – just ate her lunch and watched The Tooth Fairy. Brian and Bella had discovered that having peppermints on hand during the last few minutes of plex is essential. When they flush the vas cath after stopping the treatment, Bella says the taste is horrible. I don’t quite understand how that causes a taste in her mouth but I believe her. So peppermints help not only with the taste but also with the nausea that tends to be the worst at the end of the treatment.
We got a visit from the clowns again today. One (Dr. Knock Knock) we’ve seen multiple times but the other was new. They sang her a song and brought a big smile to her face. We haven’t seen the therapy dogs yet this visit. I really hope they return because Bella misses Zuzu a lot.
By the time Bella had OT this afternoon, she was completely worn out. She really tried very hard to do the exercises. We did the same bubble popping again today – this time I blew the bubbles and this time Bella had weights on her arms. We were going to try to do more exercises but Bella was in so much pain. Her back hurt her very badly all afternoon and her balance while sitting was not good. I think we only got about 30 minutes of actual work in OT.
Bella finally decided what she wants as reward for that tortuous EMG - an iPod touch 5. I’ve decided to sneak out and get one and give it to her as an “I’m done with plex!” gift Wednesday afternoon. It’s the sneaking out to get it part that will be toughest.
We hit a major low this evening. Tonight was the first time during this visit that Bella has cried because she’s homesick (or I have a worse memory than I think). I think it’s a good thing that she feels well enough physically to be sad about being in the hospital. That’s definitely an improvement. We both have the hospital blues. I’m depressed that the rest of our family started new schools and job today in another city that seems incredibly far away right now. I’m happy that Faith had an awesome first day and Brody already has 2 new friends and enjoyed his school so much that Daddy picked him up too early. I’m sad that I wasn’t there to see their faces and hear about all of it face to face rather than on the phone. And it’s only Monday L
Finally, my song quote for today: “God is great but sometimes life ain’t good. And when I pray, it doesn’t always turn out like I think it should but I do it anyway.”
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