Coming Full Circle
GI, Jackson

Coming Full Circle

On Tuesday Jackson had surgery to remove what is left of his G-tube hole. This is something he has been asking about for the last year. It was always his choice, but we and his doctor wanted him to be a bit older, which is why we are doing it now.

The procedure involves cutting out the skin cells that have grown down into the original hole when it healed almost six years ago. When we removed his G-tube three years ago (which only involved removing the tube and covering it with a band-aid) the hole closed up internally, but left a small hole/divot on the outside of the skin. So now he will have a little line scar instead of the divot that was there previously.

Returning to Seattle Children’s Hospital for things like this takes me back to the first 15 months of his life, with four overnight stays, ten procedures and to many appointments to count. But now this phase is complete.

Although this procedure is cosmetic and not required, I knew he would want to do it someday. Last night as I scrubbed him down with the antimicrobial soap I was looking at his tummy, thinking about how it would look different today. We actually took a picture just so we could remember. I remember the night before his G-tube surgery and looking at his tummy thinking how it would never be perfect again. But the tradeoff at the time was we got his cheeks back so it would be worth it (the NG tube was snaked up his nose and into his tummy and the end had to be taped to his cheek).

  NG tube PEG tube

  MIC KEY button tube hole

It is never easy to have your child go under anesthesia and I can’t say if it is easier when they are younger and not aware or older but can tell you if they are in pain. He was very nervous, but all the doctors, nurses and staff at Seattle Children’s are amazing and handled his fear and questions very well. Jim went back with him when they put him to sleep and held the mask. I did it once for his first procedure when he was six months old and realized that I just can’t handle watching them put my child out. As a mom I can handle a lot of things (inserting NG tubes and G-tubes, giving enemas, fixing wounds), but that is too much for me. Although it clearly affects Jim, luckily he can do it and Jack was very brave.

Dr. Goldin, who was actually the one who helped put in his G-tube, removed the fistula (skin cells in the tube hole) and sewed up the stomach wall, fascia (a layer of tissue on the abdominal wall) and the skin. Jack can’t swim for a week, but other than he do most anything once he feels up to it.

So our circle with feeding tubes is complete. We have gone from an NG tube to a PEG tube to a MIC KEY button to an eating boy to a MIC KEY removal and finally no more tummy hole. Now I just need to finish the book about our journey so others can learn from our experience and hopefully benefit.

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  1. Amber says:

    Hi my name is Amber my son Avery was diagnosed Monday with ocular albinism, we too have had trouble with foods…. I am looking for someone to talk with, the doctors are not much help to me…

  2. I can’t imagine how stressful that must be. I am glad it all went well.

  3. I, too, am glad it went well. Good luck finishing your book on your experiences! Those words you share will be a light to others who’re struggling.

    My son had to have minor surgery at six months. There was no question as to who would go back; I needed to be there till the last moment, and my partner said he wasn’t comfortable with the thought of bawling like he hasn’t for years. So I went back with my little one and soothed him while he struggled until he drifted off, and I prayed he wouldn’t be one of the rare people affected by allergy to anesthetics. Doing that one was horrible. I was able to put on a brave face and just be there for my sweetheart, but inside? Oh, man. I can’t imagine doing that over and over again–although I understand we do what we must–and I applaud your courage and strength.

  4. I don’t know if it’s because you included the pictures, or if it’s because I’m a mom too, but I’m a mess after reading this.

    With seeing that precious baby laying there, so calm and brave, and now a little boy who made it through I am so excited and happy for you!

    What a moment!

  5. I don’t know if it’s because you added pictures with your words or because I’m also a mom but I am in tears after reading your post.

    Seeing your precious baby, so calm and brave and then the result; a little boy, grown up and coming to this point.

    What a moment!

  6. This is the first time I’ve visited your blog (here by way of Let’s Bee Friends) and I spent some time reading about your boys and their diagnoses. My son has a rare metabolic disorder (VLCADD) and even though I haven’t gone through the same situations that you have dealt with, I can understand some of the emotions you have probably gone through.

    I’m not always on top of things in my reader, but I’m following you on Twitter now. I hope everything heals well over the next few days.

  7. Wow, God is so good. I’m so glad he is happy and healthy.

  8. sarah says:

    Thanks everyone for your good thoughts. His bandaid came off tonight and it looks good. He was very happy with how it ended up and it will keep healing to look even better.

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