I'm thrilled to be sending our tanks back and yet also packed them up with tears in my eyes.
I hate our old CHD. Hate it! But I miss it too.
Hypoplastic Left Heart Syndrome was familiar. After studying it for almost three years, it finally felt comfortable. Normal.
I could do single ventricle care. I knew the procedures and medications.
The projected outcomes were still terrible but I understood them. I had sorta kinda made peace with them.
I was really invested in the current research focus on the Fontan.
I knew the SV doctors and nurses and medical assistants.
I hardly needed our pulse oximeter to accurately assess Job's oxygen saturation at that particular moment because his color and work of breathing and energy levels were so telling to me.
I wanted to keep his native heart, as broken as it was. As scary as the projected outcomes were for Fontan physiology.
So even though I now look at Job and marvel at how pink he is and weep with gratitude that some other devastated family chose to donate life, I'm also grieving the loss of HLHS deeply.
And giving up Job's oxygen supply is a very tangible reminder that we have a totally new disease now.
Grief is weird. Emotions are weird.
These last five weeks have been so very full I haven't been able to do much beyond just the next step. Processing anything emotional or spiritual has seemed a superfluous luxury, but very much needs to happen.
The big boys are probably most helpful to this process with their constant questions. And can you even imagine explaining all of this to Job someday?
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