A year after surgery

This time last year it was Friday the 13th…June 13th, 2014.  Mackenzie was scheduled for spinal fusion surgery that morning.  I can’t believe it’s been a whole year.  I remember sitting in the hospital thinking that we would never get out of there.  The spinal fusion went great; no issues during surgery or anything.  If it hadn’t been for the stomach issues that were caused by the surgery, her recovery would have been smooth sailing.  She wasn’t able to keep anything down by mouth anyway, but she never really took oral pain pills.  She was walking around great just a couple days after surgery; the only thing that was tough was getting up and down, getting in and out of bed, and taking a shower.  So, to anyone reading that is about to go through (or who has a child getting ready to go through) spinal fusion, try not to worry.  I know that’s easier said than done, but it wasn’t near as bad as I thought it was going to be.

In our case, Mackenzie was one of the few to have complications from the surgery.  After many x-rays, ct scans, and waiting, the doctors diagnosed her with SMA Syndrome.  It’s extremely rare…there is only about 400 recorded cases.  Mackenzie was the first patient that Dr. Wattenbarger had seen with it and the nurses had never even heard of it.  The SMA Syndrome was the toughest part of this whole journey.  We were only in the hospital for 3 days with the spinal surgery, went home for 3 days, and was back in the hospital for 13 more days.  It is tough seeing your kids in pain and really sick.  It’s tough hearing the doctors tell you that your kid is really sick.  I’ve been in the hospital with Mackenzie and Cayden when they were really sick as babies and it never gets easier.  There weren’t a lot of smiles during those few weeks.  She didn’t eat for about 2 1/2 weeks so she was pretty weak.  Then she started going even more downhill right before they decided to do the second surgery and that was terrifying.  The whole experience made me realize that it’s just as dangerous to be underweight than it is to be overweight.  Once her stomach surgery started I was a nervous wreck.  I was more worried during that surgery than I was about the spinal fusion.  But, everything went well and her pain was gone the next morning.  A few days later she started drinking again and it was so awesome that her intestines were working again!  Then she ate food and we finally got to leave!

Over the next several months, she continued to have bouts of stomach pain.  She had to re-learn what she could eat and not eat too much at a time.  At one point we thought she was having gall bladder issues but it ended up being her intestines still recovering.  For the past few months, she has had no pain so hopefully we are finally getting past all this!  Let’s hope this year is even better.

After spinal surgery she grew 1 1/2″.  Since surgery she has grown another 1 1/4″.  I was worried that she wouldn’t grow that much afterwards but it seems like it hasn’t slowed her down!

Before and after pictures:

 

 

Not feeling great.
Not feeling great.

In ER before being admitted
In ER before being admitted

Bad night (night before second surgery)
Bad night (night before second surgery)

Finally free of tubes!
Finally free of tubes!