A New Year and a New Plan

Have you ever watched those shows where they kind of flash forward, to the past and back?  Well, I thought I'd try to write that kind of post this time.

Early in January we met with Ethan's GI doctor who after feeling his abdomen suggested there might be some stool blocking his system and ordered a set of x-rays.  Since Ethan has been x-rayed and CTed so much that I'm quite surprised he doesn't glow in the dark, I requested (and he agreed) to combine x-rays with those for his orthopaedic surgery follow up later in the week.

When we went for Ethan's x-rays, I had explained to the technician that we were hoping to reduce some of his exposure.  She said that since a spinal x-ray is a tight picture of the spine we would not be able to reduce the amount of x-rays but at least it was just one trip. 

After the first x-ray she came back to redo it.  She said something like, "I need to retake that x-ray since I did not capture his cure in the image.  I knew he had a curve, but did not think it was quite that much of a curve."  I had a duh moment where I thought I should have told her that when she said it had to be a tight spinal x-ray.  I knew his scoliosis was quite pronounced (heck, I've been with him for every one of his x-rays).  So I joked about having been right that we could have limited imaging.  I also (in a straight face) said to her, "So...what you're telling me is that we're going into surgery?!?"  She was a bit flustered and said, "I'm not saying anything..."  And I cracked to let her know, we knew the curve was bad and we know we have to go for surgery, we just don't know when.  With their PCs down that day, I figured a little ribbing might lighten their Friday.

As you can imagine all kinds of thoughts were whirling through my head over the weekend.  On Saturday night, I had a dream and in this dream I so vividly (through two different x-rays) saw the poop in Ethan's GI track.  One x-ray showed it from the front (roughly 2 inches long) and about an inch thick from the side view.  My mom suggested, if I'm dreaming about it then he must not have a blockage.

The end of the weekend, we received an email from Ethan's GI doctor...it was his spine that he was feeling.  "It is incredible the degree of scoliosis," which he didn't appreciate before.  Ethan doesn't have any stooling issues and we're to keep things up as we have.  A bit of good news at least.

We had our follow up appointment with the orthopaedic surgeon the same day we did the x-rays and he is quite thrilled with how well Ethan looks overall and that he has been pretty healthy over the past year (we've been getting a lot of these positive comments lately).  He also feels that Ethan has gained nicely and should have enough padding for when we start with his next round of surgeries in March.

That's right, I've beat around the bush enough and come to the point.  The surgeon has decided it is time to start with Ethan's scoliosis repair.  We're still planning to move ahead with the VEPTR and the March date hopefully allows for a few things: 1) them to secure the equipment required, 2) it is later in the season so should hopefully not be a very risky time for Ethan to be in hospital, and 3) for Ethan to be healthy enough to proceed.  The surgery takes up to 6 hours and will require about a week long stay in hospital to start recovery.  It takes a couple months to fully recover and then he is monitored frequently as due to growth they have to expand the VEPTR or risk breaking his ribs/getting over correction causing the scoliosis to curve the other way.  Typically they are revised every 4-6 months and fusion surgery often doesn't occur until earliest 10 years of age...which will mean a minimum of 10 surgeries once we start.

I must say I wasn't surprised to hear that we're at the stage to start with surgical intervention.  We've been trying to put it off in non-surgical ways but are only able to maintain him a bit.  And if you factor in the above comments, it just illustrates how bad his scoliosis has gotten.  BUT...I'm nervous!  Before heading back home, mom asked me not to research the surgery or stress too much.  I can't promise either but am trying to at least hold off on some of the worrying.