Ezzy’s surgeon called. We have the green light to proceed with the surgery to fix the herniated portion of her stomach…
Ezzy has needed this surgery for awhile.
In May 2011 when Ez was 3 1/2 months, after aspirating severely, she had an anti-reflux surgery known as a nissen fundoplication (for more on this read this and this). The nissen was supposed to stop her reflux and make it essentially impossible for her to vomit. The surgery involved wrapping a portion of her stomach around the lower esophageal sphincter to tighten it–permitting food to travel down her esophagus, but impeding reflux and vomit. They surgery went “so well” that we overheard the surgeon tell her resident after leaving our room, “Well, we’ve fixed Esmé.”
Only, as so many things do with Ezzy, things did not go as planned. Esmé retched. And retched. And retched. After a week we were told it would go a way in two weeks, then four, then six…then, with some hesitation, they said: eight weeks?
But she didn’t stop. And, instead, then she started vomiting again. First a little spit up around the three-week mark, then a lot of spit up. Within three months she could throw up like a freshman at a frat party, but painfully and with great effort. Around this time our new team at the Aerodigestive Clinic at our children’s hospital discovered that with all her retching, Esmé had managed to begin destroying her nissen. The wrap had slipped and a portion of her stomach was now residing above the nissen.
It began as a small thing…almost humorous, actually: Our kid was so determined to puke that she broke her stomach. Bahahaha.
But it kept getting bigger. She kept retching, and it just kept getting bigger.
We have tried to put off this surgery (with the blessing of our lovely and smart and devoted and talented GI) because, well, Ezzy was doing so well, making gains. And then because she was having seizures all the time–and GI went on the back burner. And then because she was finally feeling better…and then, and then, and then.
But last time we looked it had grown beyond what is reasonable. She now has a stomach and a second “stomach” about half the size of the first above it. This herniated area is not in her abdomen, as a good stomach should be, but has migrated through her diaphragm into her chest cavity. So, we need to bite the bullet and address this surgically (and by “we” I mean the kick-ass laproscopic “nissen guy”surgeon). Her surgery will consist of four parts: (1) pulling paraesophageal hernia from her slipped nissen back into her abdomen, (2) tightening of the opening in the diaphragm that allowed the hernia to pass into her chest cavity, (3) probable rewrapping a loose nissen/partial fundo to prevent reflux (depending on the surgeon finds in there), and (4) abdominal wall hernia repair at her original nissen scar.
The hope is that the procedure can be done laproscopically (which the original procedure was not). But the plan may need to change, in which case it becomes a more invasive procedure, with a much larger opening (her original scar stretched from her sternum to her belly button).
The weird part is that I have been preparing for this inevitability for awhile…I’ve even been eager for it, in hopes that it will improve her quality of life by diminishing her retching and making her more comfortable. But the surgeon called yesterday and said “Let’s get this on the books for next week” and in my head I was all “Wait, what? Next week?” And then he mentioned that she would be in for a week and spend a couple nights in the ICU and I started to come unraveled.
I don’t want to do this.
I mean, I totally want to do it. It is the right thing. And I get it, we HAVE to do this.
But, I really don’t want to do this…