Shabby Miss Jenn

Sunday, July 1, 2012

A Long Time Coming

We finally bit the bullet.  After a few years of wondering and going back and forth, we scheduled surgery for Wade to get a g-button.  For those who don't know, a g-tube/button is a tube that is inserted through a small incision in the abdomen into the stomach.  The purpose is so that feeding can be done directly through the tube into the stomach.
Microvasive G-button
Wade eats like a champ.  We have to chop his food up or give him things that are easily mashed, but for the most part, he eats well.  He doesn't chew food well and typically sucks food more than he chews, but he makes it work.  There have only really been a handful of times that he's choked on a piece of food that was too big.  I've also seemed to notice that when he goes through a growth spurt, he has a harder time coordinating his oral motor movements.  My theory is that it just takes him a bit to adjust to his body growing.

Even though he eats well, feeding is still a huge source of stress in our household.  If I'm being honest, it ranks pretty high up there as one of my least favorite things to do.  It takes so much time and effort to feed him since he doesn't have the physical ability to feed himself.  Add feeding him on top of feeding myself, and we can end up at the dinner table for well over 30 minutes.  The effort of doing this for three meals a day plus snacks here and there is exhausting.  Not just physically, but emotionally as well.  Wade burns so many calories because of his constant muscle "movement".  Sometimes I'm worried that he's burning more calories than he's consuming.  For a couple of years, he stayed at 27 pounds.  He was growing taller and skinnier.  We finally passed 30 pounds this past fall.  Now, he stays right around 31 pounds; even hit 34 pounds one time!  His nutrition, hydration, and weight are always weighing on me.  It's such a tough call because while I want him to gain weight, I don't want him to get too heavy since I have to lift and move him so much.

With our feeding success, I guess you're wondering what made us go the g-tube route.  It basically boils down to hydration.  Wade is not getting enough fluids to keep him properly hydrated--especially in this Texas heat!  We're lucky if he finishes a whole sippy cup or box drink of juice or milk in a whole day.  Six to eight ounces of liquids in one day just isn't cutting it.  His fluctuating tone also makes drinking difficult for him.  Some days he can suck out of sippy cup (we remove the plastic valve) without any problem.  Other days he can't coordinate his sucking, swallowing and breathing and ends up choking.  Once he chokes and coughs, he pretty much refuses to drink anything else for the rest of the day.  Which makes sense; I wouldn't want to drink anything if I choked every time I swallowed.  We've had a few swallow studies, and on our most recent one--last Monday--things looked good.  He swallowed well and did not show any signs of aspiration.  But again, with his fluctuating tone, it all just depends on the day.

As I mentioned, we did not come to this decision lightly.  There were days that things were great and I doubted the surgery.  Other days I was almost in tears because Wade wouldn't drink anything.  A friend gave me some excellent advice.  She told me to just treat the tube as an insurance policy; when we need it, it's there.  That little bit of advice sealed the deal for me.  Just because we have the tube doesn't mean we have to use it.  It's there for the days his tone is sluggish, or when he's sick, or when he has a growth spurt.  We can still feed him orally like we do now, but if it's a day I'm worried about his caloric intake, I can just supplement with some pediasure.  My plan is to give him about 4-6 ounces of water three times a day via his tube in addition to the little bit he drinks with his meals.
Wade's first attempt at feeding in the hospital.  He fell asleep right before we hooked him up.
I'm really happy that we made the decision to get the tube.  The weight that lifted from my shoulders after surgery was amazing.  I really didn't realize how much anxiety I was experiencing due to hydration and feeding issues.  The actual surgery was super quick.  From the time he went back to the time they let us know he was out of surgery was less than 30 minutes.  We were able to get a room fairly quickly, and we stayed the night at Cook Children's Hospital.  We got home around 8:30 Wednesday night June 20, and unfortunately, we have not had a peaceful night's sleep yet.  Wade ended up running a fever that Saturday until Sunday.  On Tuesday--a week after surgery--I took him to the pediatrician to see if he might have an ear infection.  I was really praying that it would be the answer to our hourly wakings of screaming and crying.  Unfortunately, there didn't seem to be any signs of ear or sinus infection.  Our pediatrician mentioned that he might be having nightmares.  Whatever it is, I hope it ends soon.  The situation was also made a little worse because we traveled from TX to VA Thursday night.  Considering it was a 23 hour trip, Wade did really well.  Hopefully we'll settle into a good sleep routine here shortly.
Halfway to VA!  Getting hydrated after breakfast at Cracker Barrel.
Besides our sleep disruption post surgery, the only complaint I have is with the actual button.  Our surgeon opted to go with the microvasive button initially.  The problem is, the little flap that closes the hole when it's not being used sometimes pops open by itself.  It has also leaked a few times.  The microvasive is supposed to last Wade about a year, but if the leaking continues or I can't find a good way to keep it closed, we'll probably make the switch to a Mic-key or Mini One button sooner than later.  I did make some really cute tube pads to help absorb the leaks.  Other than that, the site is looking pretty good, and we've had no issues with granulation tissue...yet:-)
Reusable cloth tube pads.