Remarkable Robbie: May 2011

When Robbie got his G-tube placed in March 2009, we hoped he wouldn't need it long. His GI doctor thought it could be less than a year because he had good eating skills, but his pediatrician warned that some kids don't outgrow it until closer to kindergarten.

We spent a lot (A LOT) of time in therapy and talking to every expert we could find, both professional and otherwise. Some of the best advice we got was from other parents of "tubies." It was mid 2010 when Robbie started showing an interest in eating, and improved slowly from there. But he still steadfastly refused to drink in early February 2011. Occasionally he'd get really hot and drink and ounce or two of water, but never more than that, and we would go months without even that much.

We tried numerous weans only to hit the point that he simply had to be hydrated and have to tube him again. The process was indescribably stressful & frustrating. Finally, though, in late February, we decided to try again. One more time. This time we decided to mostly ignore the numbers and focus on Robbie's body language instead. He didn't drink for a few days, but then he'd chug several ounces. Then he wouldn't drink again. Fits and starts we had, but never did he show signs of dehydration. He was still crying tears, had energy, mouth seemed moist, wetting diapers. He pushed us to the point of giving up several times. He'd go 4 days drinking no more than 6 ounces a day until we simply couldn't go on, but then he'd down another 7 or 8 at bedtime that 4th day and we'd start the cycle over again.

It took months before we stopped counting every milliliter and walking on tiptoes when he would drink, being scared to startle him out of it. But eventually we got there.

On May 26th, we went to a regularly scheduled GI appointment. When the nurse practitioner, Sarah, came in, she asked how things were going. I told her with no small amount of pride that he hadn't been tubed at all since February. She asked if I wanted her to take the tube out. I had thought it was possible we could discuss it at the appointment, but I wasn't sure if it had been long enough. I was pretty sure he was ready, but I wasn't sure they would agree, so I was surprised how quickly she go to that point. I asked if she thought we really could and she assured me yes. Right away, I started to play Devil's advocate. But he still doesn't drink 20 oz a day. And some days are really low. And we still have to encourage him, and supplement him with watery foods like applesauce. She just smiled and shook her head. "Trish," she said, "look at him. He looks GREAT. Whatever you're doing is working ." She pointed out that he'd gained more weight in the 3 months we'd been working on this than he had in nearly a year before that and said it was time. And with that, I started to cry.

I suddenly realized I didn't have the camera with me, so I grabbed my cell and took one last tubed photo.

Pulling the tube was nothing. Simply deflated the balloon and pulled it out, then bandaged his stoma (the hole in his stomach). At that point she surprised me even further by discharging him from GI altogether. He still needs his reflux meds, but his pediatrician can handle that. He didn't need a specialist anymore. Whoa.

And with that, he became a tubeless kid.