Last year. Nov. 15. We were discharged from UI after Teddy lost his 4th PD catheter. His little peritoneum and abdomen couldn’t handle another one. His peritoneum was wrecked from fungal peritonitis. Peritoneal dialysis was no longer an option for him.
That was devastating. And it was the culmination of one of the worst periods of my life. Our lives. We had spent the better part of August, September, October, and November in the hospital, away from the other kids, away from daddy, dealing with unexpected surgeries (five surgeries August-November), complications, issues. And that damn wreath. I hate that wreath.
We left the hospital a year ago yesterday planning to have to start Hemodialysis. Having to make a Plan B for how we were going to make that work (we settled on me and the kids moving to IC and finding a nanny). Uncertain about the future. Scared. Worried. We were in limbo. Again.
Two years ago.
Mid-November. We’d left the care of our first perinatologist because she didn’t do births, and we wanted to at least get someone on board who WOULD be able to supervise the birth if a hospital birth became necessary. We had moved care to Dr. Asshat, coordinating with our midwife. Two years ago, we were still hoping for another homebirth. Two years ago, by this point, we’d heard:
- The baby has two kidneys and one looks small but the other looks healthy.
- The baby has one kidney and it doesn’t look good.
- The baby has one kidney and it looks fine.
- The baby probably has no kidney function at all.
- The baby might not make it.
- The baby will be fine.
- The baby will not need a NICU and won’t need close monitoring after the birth (this from Dr Asshat)
- The baby will need to be born possibly as early as 32 weeks and will have a lengthy NICU stay.
We were under so much stress. From researching possible kidney issues, researching issues related to the pregnancy and delivery. From family calling to argue with us over our choice of homebirth again if at all possible. From worry.
The amniotic fluid had begun to be a concern, and by the 24th would practically disappear completely. I was spending literally all of my days drinking as much water as possible. All I did was drink water. I was so tired of drinking water. It made no difference (and, logically, I knew it wouldn’t). We were in limbo. Things were uncertain. We were stressed out. We didn’t know what the future held. We had NO IDEA what the next year or two would look like.
Teddy has some ongoing issues that are concerning. We’re not sure what’s going with him from a GI standpoint. His liver continues to be an issue. We’re still waiting from some tests from genetics.
But I don’t feel the weight of uncertainty on me any more. More so than at any other point since about August 2011, I feel like the future’s going to be OK. (That in and of itself has me concerned, but that’s just part of the psychosis of having a chronically ill child – you grow to be afraid of the good times.)
Compared to this time last year – compared to this time two years ago – things are going REALLY WELL for us.