Hostpital Stay: Day 5

Trumpet mouthpiece. This way he can practice a little but not shock the neighbors.

We had a nurse today who does not usually work the respiratory wing, so she did things a little differently than our normal. Usually, now that Toe is off maintenance fluids, he only connects with the IV pole for antibiotic treatments - 30 minutes every 6 hours. Today, the nurse would connect Toe with the antibiotics and then leave him connected... so he was much less mobile today than yesterday.

Almost every door in the ward has contact precautions listed on the door, which means kids in isolation, which very likely means CF. I think about our routine - all of the varying meds, all of the breathing treatments, all of the people coming and going, and the extras they have to bring us because we can't use the family lounge - and then I multiply that by 10?15? kids and I can see how things get missed or are done differently. We are all doing the best we can and working to help each other out for the benefit of these kiddos.

We finally decided just to take a walk with the IV pole. Toe can really hustle with that thing!

Inhaled meds are the first part of breathing treatment. He chose to bend it to blow back into his face...

As one might imagine, Toe is going through a range of emotions while we are here. Ok, we both are. Mostly he is comfortable and happy to be here, but he has his moments. We actually were able to have an appointment with his counselor today via FaceTime. It was nice to have another adult who is focused on his emotional well-being check in with him. We are so grateful she suggested it!

This evening a friend dropped by and brought a new (XL) heating pad (I'm having a slight fibromyalgia flare up. I'm stiff and sore!) for me and racquet balls for Toe and went with us to the sky bridge to play with a racquet ball and super ball.

We have hit the point in the stay where I become hyper-aware that we are effectively living in a camper, sailboat, or tiny house (choose your metaphor). Staying comfortable requires constant tidying and there is never *quite* enough room. Between the tidying, shifting furniture, supervising the constant influx of new teams, monitoring my kid's well being, and serving as primary entertainer, I am tired. We are working on being gentle with each other, showing our gratitude to staff and each other, and generally creating a safe place for both of us. More tomorrow!