Monday of this week was Gage’s last treatment in an effort to save his kidney from being rejected. The treatments went easily enough.
I was allowed in the first clinic, for the plasmapheresis. It’s relaxed and comfortable in the space and feels oddly familiar to dialysis. I am not allowed in the second clinic – the transplant floor clinic. It’s fine, mostly, and I waited downstairs but was strange to not be with him because HOW DO I KNOW IF THEY ARE DOING THINGS PROPERLY UP THERE? This is the struggle for the Inbetween World for parents and just adult children.
Now we wait. A month or two? We will know then if he is in that lucky 80-85% of people for whom this treatment helps. For now, his numbers look good, which they say is a good sign for right now.
Near the end of last week, we received a call from our daughter’s transplant team at Children’s and they were more than a little concerned about her kidney function. We spent a week ago today going to Children’s for stat labs to make sure her function had not continued in the state of decline. Her labs didn’t go down as much as they had hoped, but had come down a little, so for now, no biopsy. We will check again in another week. Were we nervous? A little, but you can’t be in this kind of life with success long term unless you pace yourself and your worries.
For now, the liver side of their diseases are stable, while his are a bit more worrisome. The liver team just changed his appointment to early June, so not emergent.
So last Saturday in an effort to distract our daughter from her senior year being obliterated, we came out to the country to fresh air, fewer people, farm animals and the epitome of social distancing. We had a week at the country with spa planned but that was not to be, so here we are, doing our own spa week. We’ve feed animals, she went horseback riding, ate lovely farm-fresh food, and napped each day. For some reason we don’t, we are enamored with feeding goats Cheerios. It’s been lovely here. We leave tomorrow.
Someone recently asked me how we remain calm during these (for us, expected) unexpected challenges along the way with two young adult children who are chronically ill. We run at a different worry level than typical parents. The stress and worry you feel during this time of COVID-19 for yourself and loved ones’ well-being and lives is the way we have felt every day since the kids were diagnosed with ARPKD/CHF, about 18 years ago.
Our tact has mostly always been to be prepared for something bad, but live like it will not happen.
worrying along with you, dear ones. so glad you got out to the country–that really looked like fun. I’d heard of that place from a friend who wants to LIVE there!
I would pick this place to come if the beach wasn’t the beach. It’s lovely.