Just so tired but home

We are all home and have the firelog on while Frost eats apple slices and Wren sleeps in the bouncy chair. I grabbed some cafeteria food on the way out.

They all seemed confident about discharging us but I am not really happy this time. Last time I felt Wren was getting better now I just feel we're waiting for the next bad news. I have really lost my optimistic confidence that it will all improve gradually and he will go on living like this long term. I know they say he could do fine but they use words like "tolerate"... too much. As in:

"many kids tolerate a gradient like that for years"
or
"It just depends what his body tolerates"

I don't want him to have to live with tolerance like a perpetual chain on his leg. I want him to live in ease and slow breathing.

After the surgery I knew he wasn't fixed in a normal way but I felt that the ways his heart is unusual were ways that he could - to borrow the word - tolerate. That's why this whole "new" issue of the second coarc and the sudden progression of teh aortic stenosis just shocked me. I was hoping for a year of being like this before our next lesson in heart anatomy.

I keep running it through in my mind but I am sure there were no new signs that Wren's condition was deteriorating until we saw that echo on Monday.

Even as we were discharged Dr Law said he thought the echos looked good but that this subaortic area may, need surgery later - open heart surgery, that is. Subvalvular aortic stenosis is not amenable to catheterization. I can just see myself knowing that hospital way too well and I wonder if all of us with kids who've had surgery live with this unknown hanging over their child or if it goes away and you reach a kind of tenuous stasis, some kind of equilibrium in which the reality of heart "danger" remains but you live with it, much like a pitbull next door. That known enemy.

We have another clinic visit scheduled for Monday. I suppose we'll get an echo and I can't claim to feel any joy about it this time.

A few hours before we checked out a new patient moved from Cardiac ICU to share the room with us. He is one month old and medivaced in from Boise, Idaho for a coarc repair. He had the same subclavian flap repair Wren had and also has aortic stenosis with a bicuspid valve. In his case the team are telling them they are "confident he is now normal and shouldn't expect problems". I envy them the sense that "this is it" for their child and that he is now "fixed". I don't think I can return to that hopeful complacency.

Sorry this is such a downer of a post. I feel sad and probably overtired and am not sure what to do next other than clean the house.