The Surgery Hill

The time between surgeries is kind of like a hill.  Or maybe the opposite of a hill.  A dip?

I’ve been thinking about your next surgery a lot, Miss M.  But, we’re still at least 2 months away.  Why am I thinking about it now?  Well, I realized today that we’re at the peak of the between surgery hill – 2 months since the last, 2 months to go to the next one (give or take since it’s not technically scheduled yet).  So we’ve exited “post-op” and are entering a new “pre-op” cycle.  In fact, I just got a letter from your cardiologist, reminding us that we need to make an appointment, which I need to schedule so that the cardiologist can give clearance for your next surgery.  So the pre-op cycle has begun.

Since I have some catching up to do, and this isn’t the kind of stuff that makes it into the baby book, let’s talk about the pre-op from your cleft lip repair and your spinal cord de-tethering. The cleft lip repair pre-op was relatively easy.  3 specialists – ENT for ear tubes, audiologist for a follow up ABR, and the craniofacial surgeon.  The team did a good job getting everyone coordinated on the surgery day.  The only thing we had to handle was getting cardiac clearance in advance.  But then we had the unlucky timing of finding out about your tethered cord the week before your lip repair, so unfortunately this threw things off a bit.  Are we still doing the lip repair next week or not?  Is the craniofacial surgeon comfortable operating on her with a tethered cord?  How soon after the lip repair can she be scheduled for another surgery? So many questions, so difficult to get answers.  And then the neurosurgeon decided the craniofacial surgeon really needed an x-ray of your neck flexion and extension before your lip surgery, so that was added to the pre-op plans at the last minute.  Adding another worry – is the craniofacial surgeon going to look at her x-rays and decide it was too risky to operate on her lip (the problem is the anesthesia – under anesthesia, there is no muscle reflex to stop movement if it is painful/causing harm, so the surgeon could have tweaked her neck and broken something, if her range of motion was bad enough, for example)?  But we made it, and your surgery happened on schedule.

The pre-op for your tethered cord was absolutely one of the most difficult and emotional experiences of my life – third only to the birth of your brother and yourself, Miss M.  We’d been told that you had to lie flat on your back for 48 hours after the surgery.  Piece of cake – oh wait, you have a cleft palate and can’t suck like a typical baby and might just choke on everything and be unable to eat for 48 hours?  Hmm.  This could be a problem.  So I started about 2 months before the surgery, calling the nurse line at the neurosurgeon’s office, always speaking to someone different, getting responses varying between “I’ll call you back” (and obviously never getting a call back) and “the neurosurgeon will answer your questions at the pre-op appointment”.  When I found out a couple of days before the pre-op appointment that we’d be meeting with a nurse practitioner,  not the surgeon, I realized that ALL of the answers I’d been given were crap (not just some of them!).  So, the question persisted after the pre-op appointment, but at least I had spoken to a someone in person who seemed totally on the ball and I expected a clear answer from her (vis a vis the surgeon) within a couple of days.  Instead, what I got was a phone call from a random nurse from the nurse call line saying the surgeon is willing to postpone the surgery if you still have unanswered questions and want to meet with him again.  THREE DAYS before the surgery.  TWO DAYS before your Grandma flew in from 1000 miles away.  TWO MONTHS after we had originally scheduled the surgery.  I completely freaked out.  NO, we are not CANCELING the surgery.  Then I got a call from the hospital, saying “we heard you are canceling the surgery?”.  NO, we are not CANCELING the surgery, how did the hospital even get that message so quickly??  It was a mess.  I got to know the neurosurgeon’s scheduler on a first-name basis.  And then, less than ONE DAY before the surgery – the hospital calls again – so, we don’t have pre-approval from your insurance.  Through pure persistence and will power I GOT that pre-approval APPROVED – ten phone calls later, after being told it wasn’t going to happen that quickly multiple times.  DAMN STRAIGHT.  We are having that surgery on SCHEDULE.  And the surgeon finally agreed that we could roll you onto your side for feedings, so at least we had a plan for how to try to feed you.  So, you can understand why I might be a little anxious about entering another pre-op cycle.  Palate surgery, here we come!

I think what people who have not had a child with congenital birth defects requiring surgery do not realize is that it is NOT all laid out.  The surgeons are flying by the seat of their pants, if you will.  You are incredibly unique, Miss M.  You are not a routine surgery, in any way.  Repairing you is an art, not a craft.