light at the end of the tunnel

The hardest aspect of trials for me is not knowing how long they will last. When Will first was recommended to have an ng tube placed, Brigham and I were relatively cheerful about it. We did not relish the idea, but we felt optimistic that it would finally help him put on the weight he needed to be healthy and that it would be relatively short-term. The tube was placed in January of 2009; I was sure it would be done with by July. The time came and went and nothing really changed. He didn't even make progress in his growth. It was like we just substituted his po calories for tube calories. I really think that is what happened. And now we had to deal with vomiting, tube replacements every few weeks, skin breakdown under the tape, food refusal and the fear that his tube would get snagged or pulled (this happened more than it should have) or be put down too far, or not far enough. It sucked. But still we were not that worried, more burdened by the duties of its maintenance.

Then January of 2010 came and we switched doctors to a man who went on high alert. He was sure we were doing something very wrong, yet he seemed mystified by the problems we were experiencing (incredulous about Will's vomiting episodes and food refusal). Accusatory that I had not gotten Will in to a full-time treatment facility (6 weeks long, out of town), judgmental that I was pregnant when I was so clearly failing with my current kids. That was when we started to lose hope that Will would just grow out of this. We got really stressed and Will's struggles with food seemed to intensify. We were bolusing him constantly, and he threw up multiple times a day. By the fall of that year, we had switched doctors again to someone who thought to prescribe antacid to get the vomiting under control (it worked, but by now it was August) and had his g-tube placed. His g-tube surgery brought out the saddest little boy I have ever seen. I think he felt betrayed by us when he had been promised this miraculous transformation and he awakened to a thick foot long tube hanging out of his stomach (you can see it in the photo below). He wouldn't walk for a week, he couldn't keep anything down. He developed a facial tic. He lost weight. We did a feeding treatment out of town and he made some progress, but not enough to be kept on for the second week. The therapist said he seemed depressed and that we would be wasting our money and our opportunity to use the facility and that we should go home. A month later his tube was pulled out of his stomach when he was playing a climbing game in the back of my parents' car. More trauma.

Will grew well during the rest of that year and into 2011, but it was only because of the tube feedings. But we were happy and relieved that at least he was healthy and growing. We started to despair that this was our new life, and to despair that maybe we were looking at years and years of daytime tube feedings and nightly hook-ups to a feeding machine, diapers, soaked sheets and clothes. We felt so sad for Will that one of life's great pleasures--food--was his deepest aversion, and that he had to face it multiple times a day. It was like a disability, a type of blindness.

I told him on New Years this year when we shared our family resolutions that I knew this would be his year of not needing his tube anymore. I thought there was a 50-50 chance of making enough progress that we would only need to supplement at night, which would be life changing in itself. But Will was so happy at this news of mine. He believed me, I guess.

He also came down with the flu. While this meant 24 hours of sickness for the rest of us, for Will it meant 7 days of vomiting and fever. He ended up with strep and double ear infections. We couldn't feed him anything other than pedialyte and he lost weight like crazy. We failed to order more enteral supplies and ended up without his night bags, too, for a few days. We felt like the worst parents.

I don't know how much of it was my declaration of faith that Will would make progress this year and how much was the total cessation of tube feedings (which we have tried periodically and in many forms before to no avail), but Will has been eating totally normally all week. He has asked for new foods and declared his approval of them. We have not had to bolus or supplement at all. Maybe it is too soon to say that he has turned a corner, but the change in him is so stark that I can't help but feel that he has. We used to be so pleased when he would take a bite or two of something without throwing up or complaining. Now he is eating things he used to claim to hate (like chocolate cake), and eating them in appropriate amounts.

This is life changing for him and for us. I was worried about whether I could send him to kindergarten. I was worried that he would always feel different and strange, always hate food, always feel a little sick from the bolusing needed to keep him healthy. It seems that all of that might be in our rearview mirror now. It came on like a miracle.

I am praying that he will keep this up, and that maybe he can even forget about his life of hating food and he can continue forging his way into a new adventure of tastes. Maybe even one day he will be fat. A mother can dream.