Sam's Story

Kerri - Sam's Mom
January 2007

Sam was diagnosed with gerd and dge since 6 weeks old. At about 3 months he was ftt. Late October he decided to only eat about 12 oz. for 3 days which brought us to the ER. They said he probably had a "bug" and to watch him. That Monday we went to the Ped. for the same thing, and were told he was over medicated and just a small baby. He was 5 months and 12 lbs. and dropping. Not satisfied I brought him to the GI the day after. By this time he was forcefully throwing up everything. I was feeding him by a medicine syringe. She admitted us the the hospital on Halloween for feeding observations. Everything went down hill.

The nurses couldn't even get him to eat. I was the only one he would eat for, not that it mattered since he was still puking. They put him on an IV since he was severely malnourished and dehydrated and they put an n-tube in. He threw up on the tube for 3 days as they tried adjusting the amount. He was on neocate at this point. When that failed they point the n-tube in his intestines. He was down to 11 lbs now. They do that using x-rays to be sure it goes in right. That is when Sam earned the name "iron man", he broke out of his restraints and my dh had to hold him with the nurses. That night was horrible because of his movements he had stomach bleeding which he puked up that night.

They tested him for EVERYTHING. Everyday and night blood work was ordered, or x-rays, and urine & stool samples. We went for CF testing. They scoped him during this time and did like 3 more upper GI's. With nothing else available we had a surgical consult. The GI recommended fundo with pyloroplasty. The surgeon said 90% of the time the DGE would resolve or at least improve after the fundo, so we would hold off on the pyloroplasty. Me and dh would just happy to hear something could be down. Our little baby was just losing and losing and everything was negative negative. It was the worst time of my life. We all agreed the fundo was necessary. He had surgery 11/9 at 11 pm. It would be the longest day of my life. He had the fundo and g-tube done successfully. We stayed 2 weeks in the hospital.

Was it successful? I suppose. He was eating through a tube placed in his intestines. There wasn't much I wouldn't do, and if there was a way for him to keep food down I was willing to try. It stopped him from throwing up, BUT it did not stop him from trying to, and that was even more unbearable than watching him puke. His eyes would swell and tear and his mouth would drip drool as he sat and gagged and there wasn't a blessed thing I could do, but sit and rub his back. What was the alternative? He refused to eat and was losing weight and was dehydrated and FTT. It helped him gain weight by literally forcing him to tolerate food his little body was unable to handle. It did not improve any symptoms, in fact it became completely clear that the DGE was more the culprit than anything else. He was checked for emptying again and it showed an emptying rate at 5%. He is recovering as I write this from a Pyloroplasty surgery, the one the GI recommended to start. I agreed w/ the surgeon that if less will work try that first. In hindsight I should have chose both and saved my boy 2 months of agony. He is still FTT, he is 9 months next week and weighed in yesterday at 15.05 lbs.

He is still dependent on the g-tube. Mentally, I have a hard time accepting the tube. I try to feel like everyone else and see it as a wonder thing, but I can't. My heart breaks every time I hook him up or every time my toddler says Sammy, boo-boo.

I will say one thing I would not choose surgery unless it was ABSOLUTELY necessary. I hate thinking that we keep invading and manipulating his insides without evidence of how it will effect him throughout the rest of his life. But then like it or not it sometimes it has to be done.