Feeding Tube Awareness Week

February 6-12 is Feeding Tube Awareness Week.  You can find more information here

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After Jack had surgery to repair his hypospadias on November 10, he had trouble breathing and was admitted to the PICU at Riley Children’s Hospital.  There wasn’t much improvement in the days following surgery and he then began showing some other symptoms with his belly. On Monday, November 14, Jack went back to surgery and they found he had a perforation is his duodenum.  The recovery from this surgery was very slow as Jack’s stomach was not working.  After weeks of TPN nutrition (through his veins), Jack had a G-J Tube placed. We were grateful for the tube to provide nutrition for Jack and also allow us to bring him home for his 1st birthday and Christmas.

Jack’s G-J tube goes directly into his stomach from the outside of his belly. From the stomach, the tube goes into the jejunum. The tube has 3 ports.  Jack’s tube looks just like this.

When the tube was placed and when he came, Jack received his formula through the J or jejunal port.  We would leave the G or gastric port open to drain into a diaper. Eventually we were able to clamp the G port and start Jack on oral feedings.  Jack would then still receive feedings through the J port at night.  We then progressed to his feedings going through the G port, which Jack tolerated much better. With the J feedings, he had a lot of gagging and vomiting which is not uncommon.

Last week, we visited the Feeding Team, which consists of a dietitian, speech therapist and occupational therapist.  Their goal is to get Jack off the feeding tube in the next month. Our first assignment was to turn his rate down (we cut it in half) at night. This would hopefully  make him more hungry during the day. We also had instructions to only let him have 30 minutes with each bottle.  Our last assignment was to offer yogurt or another solid he tolerates (which is none at this point), three times a day.

How is it going? I would say it’s not right now. Jack hasn’t been eating well during the day when we limit him to 30 minutes. We tried pudding per the speech therapist’s recommendation and he was not a fan. When Jack gets something in his mouth he doesn’t like, he gags and usually vomits.  He does love yogurt and has been doing well with that.

Today he was spitting up a lot of his bottles and I’m wondering if he has a little stomach bug. There is never a dull moment around here!

We have a weight check a week from Wednesday and if he is gaining (which at this point he is not), we will cut out the the tube feeds completely. I sure wish it would be this easy, but I think Jack will need more time. We will reevaluate next week after the weight check. Next Monday, Jack will visit Dr. Engum  to have his  G-J tube switched out for a G tube since we no longer use the J port. This will be nice, because Jack won’t have a tube protruding from his belly.   It will also decrease irritation around the site and hopefully be more comfortable for him. Please keep Jack in your thoughts as we make this transition.

 

I’ll leave you with this touching video in honor of Feeding Tube Awareness Week.

 

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