Hospital Stay - Day 4: Fraying at the Edges

 The kid woke up grumpy. Now, to be fair, grumpy for Toe is still pretty good. He had moments of being fantastic today. There were also many road bumps. We had to have many talks. He had more than one defiant moment with nurses and respiratory therapists. This hospital thing is just cutting into his play time. Every time he starts to get really into playing, there is another distraction: IV therapy, meal that must be eaten, breathing treatment that must be done...

Our respiratory therapist today was fantastic. She said to me, "It's a control issue. He has absolutely no control here. So if he wants t make up the rules [of the game they were playing], I'm going to give it to him." She was SO right. The less control he felt he had, the more defiant he became. No tantrums, just digging his feet in and slowing everything down.

For your enjoyment, here are some photos he took of me while I was trying to have a serious conversation with him:

(Ok, if I make a face, maybe he'll laugh and tune in again)

But, seriously

No, really

Ok, I'll flash you my "goofy-serious mom" face. I get it.

We were able to take a really nice walk together. We spent an hour writing notes to each other (in character during imaginary play). He worked with one of the on-site teachers to learn about bats. We had family visit.

Although I had to push, pull, and cajole, I think I managed the schedule better today. Things happened in a timely manner and he was able to get to bed earlier (still not as early as I'd like, but somehow getting ready for bed took almost an hour....).

I'll spare you the dirty details. Let's just say, I felt a little like a nag and a lot like the "NO" mom.

However, in the evening, after Toe actually ate a decent dinner, and earned the right to play in the courtyard. Toe is in isolation here. When he is in the unit, he is confined to his room. If he wants to leave his room, he must wear a mask and immediately leave the unit. So we can walk around the hospital, but he can't play with any of the kids here (risk of infection. We're in a respiratory wing. CF kids can infect each other and there are other kids suffering from various viruses/bacteria).

The gray area of our wing is the courtyard. If no other kids people are out there, Toe can go out to play. They gave him a kickball that came to us brand new and that we disinfect after play. It stays in our room.

Not only did we get to go out this evening for the first time, friends arrived right then (with clean laundry and flowers - I kiss your feet, G and A!) and played two on two with us. Shockingly, Toe's team won. Here's the courtyard:

 Today's lesson: basketball with a mask makes you hot FAST.

Toe actually got some great exercise and didn't have a coughing fit (an improvement).

Some quick answers to FAQ:
1. I am staying with Toe in his room. They actually prefer this because that means I entertain him. They have amazing staff and volunteers who are available for the amount of support you need. When J and I were both here over Christmas, we didn't need much more than the medical stuff. Now that it's just me, they check in more regularly.
2. They are feeding me. Some grant they currently have is providing me three trays a day with Toe's meals (we eat all meals in the room). It's a little bit of a pain, because delivery of a meal takes between 45 minutes and an hour and a half. The conversations are tricky:
Me: Toe, I'm ordering food. What do you want?
Toe: I'm not hungry.
Me: It's not for now, it's for an hour from now. Maybe more. What will you want?
Toe: I don't know. I'm not hungry now. Let's deal with that later. I'll know what I want when I'm hungry....
3. We are here through Monday. On Monday, Toe will have PFTs and that will determine the length of antibiotics and when we can go home.
4. J will be joining us on his weekend, but until then, he is home, working, and Face Timing with us every chance he gets. It has been very hard for him.