Archer’s feeding tube experience

When Archer was born, he had difficulty nursing and gaining weight and was diagnosed with failure to thrive. We began to supplement with formula, but his weight gain remained slow and minimal. We didn’t know he had pbd at that time.

As he’s grown he has expanded his palate, but eating remained a regular challenge for many reasons. He was picky for one, and he would often gag when introduced to more complex textures. I struggled to get him to eat enough and in a reasonable amount of time, and as he got older he became increasingly too distracted to sit as long as I needed him to. Our family meal times deteriorated as my sole focus was on Archer’s nutrition. I began to feel anxious before meal times and often both of us ended up in tears with wasted food. Sometimes Archer ate well, and sometimes he wasn’t interested at all. I would feel exhausted as I tried to distract him with electronics and bribe him bite by bite. We tried feeding therapy, and a nutritionist even suggested we try highly sugared supplement drinks for him. During times of illness, he would refuse to eat and drink, which was always a huge source of stress. During one illness in particular, we ended up in the E.R. getting IV fluids. Traveling was stressful because I worried about finding things he would want to eat.

I considered a g-tube because many children with PBD have one, but I was scared. I worried he would stop eating by mouth, or that it would be more stress than what we were already experiencing. I began to research and ask other families about their experiences. I learned that many individuals, adults even, get g-tubes for a variety of medical reasons. Every family I spoke with shared what a positive experience it was for them, and I sensed the same from other stories I read. I wanted to give Archer the best possible nutrition while he is doing well, and not as a last resort. I realized it was a way we could help his body sustain itself through his disease process. This was a way we could help him fight PBD.

It has been almost a month since his surgery, and we couldn’t be more pleased with this decision. It was a fairly simple surgery, and Archer recovered quickly. Of course we had some initial issues as we learned how to use it. My husband and I had to laugh at ourselves as we squirted food all over the walls and carpet. He was squeamish about the tube before the surgery, but he ended up being way better than I was at attaching the extension tube. It required a lot of teamwork initially because one person had to hold Archer’s hands away from his tummy because he wouldn’t let us attach the extension tube. The tube clogged early on as well.

Archer’s younger cousin Nathan also has a g-tube for a very different medical condition, and my sister-in law sent us how-to videos that I watched over and over. She would call and walk me through problems I was having, and told me about her favorite g-tube supplies (I never imagined we’d be bonding over our sons’ g-tubes, but I consider it a special blessing nonetheless!). I would have been so lost without her guidance during those first weeks! We are truly so grateful he has his g- tube. I see it as a very special part of him, and not something that makes me sad at all.

We have so little control over how PBD affects Archer’s body, even as it struggles more and more with daily living as he grows older. We have taken a little of that control back by getting him consistent, adequate nutrition and fluids. Worrying about his nutrition has taken so much time and energy the past 8 years, and I have definitely experienced caregiver burnout from feeding stress alone. Now I feel a huge weight lifted, knowing we don’t have to worry about that part of his long term care. He can eat by mouth as he wishes, and we can supplement with extra calories as needed. Archer hasn’t let it slow him down a bit, and he has adjusted beautifully. He even has a teddy bear with g-tube that the hospital gave him.

Getting a feeding tube for Archer has been such a huge blessing for him and our family!