Cerebral Palsy, G-Tube, Health, Love, Our Son, Parenthood, Photos, Sebastian's Achievements, Toronto

Home and Recovering Part 1: the G-tube site

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It has been one month since Sebastian had his G-tube surgery. Every day is easier. Some days are pretty tough. Sebastian had three days in hospital post surgery day, four days total. That’s protocol here. I’ve heard in the US it is a one day procedure and no hospital check in. I’ve also heard first tube types before the Mic-key button are different too. Sebastian has a long G-tube.

It looks like this: The end with the pigtail curl attaches it into the stomach. The red port end opens to attach a pump or syringe for medicines and feeds. Lying on top of the iPad gives a bit of perspective at how long it is.

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There was a suture with an anchor attached pulling his stomach to the side of his abdomen for the placement of the tube. The suture is removed two weeks after surgery, removing the anchor. The tube remains in place in the stomach. We use tape and guaze to keep the site covered and the tube from moving. We rotate the tube like times on a clock (on his abdomen) to keep the skin healing evenly and to also prevent it from growing over the tube.

We clean his site every night. For the first three days post surgery, it was cleaned twice a day. When Sebastian came home we had a home care nurse come every other day for a week and then each week her visits grew further apart. She made sure we did the dressing change properly, checked the site, and ordered us more supplies (free of charge). She also cut the suture anchor. We’ve only seen her a couple times since then. She now mainly comes to make sure that we have the supplies we need, which is nice as it saves us from purchasing them ourselves.

At first if was comforting to have someone come in and make sure everything looked ok, etc. But each time I felt like I knew more than she did. I suppose I was getting more and more comfortable with the dressing changes too. One afternoon the nurse came before ali was home from work, so she was holding Sebastian’s hands and I was changing the dressing. I always hold the tube in place as I am terrified it will get accidentally pulled out. Because that happens. I must have let go for a moment to get the gauze and I looked down and his tube had gone partially into his stomach. I looked to the nurse for help and she had no idea what to do, short of suggesting we take him to the ER immediately. I knew that was not necessary. Prior to the surgery we had to take a four hour class to learn how to care for the site after surgery as well as trouble shoot in case the site was infected (see the paediatrician) and what to do if the tube did get pulled out. Going to the ER was always last on the list.

I got our handy reference book that the G-tube nurse had given us and quickly scanned it, finding nothing. We held the tube and with each exhale it came out. After the nurse left I took more time to go through the reference book and discovered that at each dressing I should -carefully-pull the tube enough to make sure it is snug and not going into the stomach as it could obstruct the small bowel. The things we learn as parents that we never knew we would need to know. I know a lot.

Changing the dressing is becoming second nature. There is still a tube going into my son’s stomach. It is a part of him now. It enables him to get all of his seizure meds. It enables him to be fully hydrated. It enables him to receive more calories. Progress is small but he is gaining weight and he is starting to fill out more. This is just the beginning.

The tube site is healing well. We monitor the skin around the tube, making sure it doesn’t grow over. Sometimes the skin pulls and bleeds a little. (I am not good with the blood.) Sometimes there are stomach juices that harden around the site and we soak it in the bath or with a warm, soapy cloth. We still keep the site covered with gauze and hyperfix tape, which also keeps the tube from moving around. Complete healing time can take between 8-12 weeks. We are scheduled to go back at 9 weeks post op for a check up. After 12 weeks we may be able to switch to a Mic-Key button.

It looks like this:

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The site is still sensitive for Sebastian when we change the dressing but it is getting better. He squirms less and is more comfortable and relaxed. Us too. His perfectly soft skin is still holding up against the sticky tape holding everything into place. I alternate between using rubbing alcohol and a product called Remove to get the tape and stickiness off. I’m comfortable and confident changing the dressing now but still need help cleaning around the site sometimes. Ali and I make a good team.

Sometimes it is so strange to see a tube coming out of Sebastian’s stomach. But we have to pretend and accept that it is normal. Because it is our new normal.

Stay tuned for Home and Recovering Part 2: feeding/eating with the G-tube. And how it is affecting Sebastian and his reflux, naptimes, etc.

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2 thoughts on “Home and Recovering Part 1: the G-tube site”

  1. It really does become somewhat “normal.” After it came out, I was completely off-kilter because I was so used to the logistics of the tube. Also, the Mic-key is significantly easier. The fact that the button is in our child’s stomach? Always a bit disconcerting.

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  2. It gets less weird. I promise. My dad had one for four months after he had a stroke, and at first it was odd, but very quickly it just became part of the deal.

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