Lately, our lives feel like we are trying to go up a ‘down’ escalator that is going really fast. If we keep moving, we make progress and even sometimes feel like we get a glimpse of the top. If it slows down, we might feel like we can take a break, but if we rest, before we know it, we are back near the bottom again.
Poor Brendan had a really rough day, and used all of his energy to breathe and throw up. He pretty much slept all day, or watched videos while being held. His pulmonologist has ordered him a steroid burst to help with the inflammation and to help him fight this off. She also wants him back on the ventilator every night to sleep, even after he gets well again, until she sees him in October. She thinks that maybe he isn’t ready to get off the vent after all, he may be using too much of his own energy breathing and not getting fully restorative sleep. That sets him up to be weaker when it comes time to fight off illness.
So we slide back…

Trevor isn’t old enough to understand that when we are terribly worried about Brendan that it would be nice of him to relax and play, or sit and quietly watch a movie. He was wound up, still has a stuffy nose himself, and he wasn’t liking all of the attention that Brendan was getting. Since Bill worked from home, Brendan had a nurse, and there was nothing more that I could do to make anything better, Granddaddy, Trevor and I left the house to give Brendan the best chance to rest.
We did a little tour of three local hobby stores looking for some new tracks for the very old trains that Granddaddy brought with him. Trevor really liked to help shop.

One place even had a cool train table set up for him to play

Then Trevor decided that he really needed some fries and tots from his burger joint, so we went there for lunch

Brendan slept and slept. He would get very hot if he was held too long, and he was needing too much “access” to be in his crib (and he wasn’t liking that) so Bill and his nurse set him up a “bed” on the floor. He was much more comfortable there.

He is getting lots of love and cuddling and care and he is hanging in there. In the past, his numbers have been a lot worse than this. I just hope that we have hit the low and we are on the way back to healthy. We really want him to stay home and fight this off.

Granddaddy helped keep Trevor occupied with coloring in the office. Trevor did a great job with it for a long while, but then he just couldn’t resist. He took a bite of a crayon.

Trevor went to bed with a stuffy nose enough that he couldn’t use his paci, but he is doing OK. Brendan had his sponge bath in the living room and is having his “Daddy nap” in the chair. We hope that he is able to be a bit more alert tomorrow and that he feels much much better. And maybe we can take a few more steps up again.