Feeding Tube Awareness Week

The last two years, Feeding Tube Awareness week has encompassed the anniversary of the date Kyle had his tube surgically placed. His first tube was a PEG, and we would use a safety pin to secure it to his diaper so it wouldn't pull down on his little tummy. It was an experience learning how to adjust to this tube hanging off his skin all the time.

Shortly after bringing him home, we noticed he had slight discoloration on his chest. We took him into the pediatrician because, even though he was our third kid, this new situation put us back into hyperactive parent mode. Our doctor examined him, checked to make sure it wasn't fungus, and then decided it was probably a superficial bruise from a thumb. His guess was that Kyle still had very fragile skin and accidentally got bruised one of the times we grabbed him quickly during a reflux episode. I felt embarrassed and dressed Kyle to go home. While I was resecuring his tube, I noticed that when I arced his tube to be out of the way, the port laid exactly over the bruise. I felt very silly for taking him in for a bruise

I did not love the PEG. It was very convenient because we could sneak meds into him while he was sleeping without unbuttoning his pajamas, but I didn't like the way it pulled on his belly, especially during baths.

After he had his tube for about 6 weeks, we went back to his surgeon, and he placed Kyle's button in. Now we could take off the 12-inch tube in between feedings and I felt more comfortable bathing him.

The surgeon taught me how to replace the button myself and gave me a spare to take home. I'm glad he showed me because a few weeks later, Kyle's extension tube got caught between my body and Kyle's crib, and the button pulled out of his stomach. It was nerve wracking the first time I put his button in, and I felt horrible that it was my fault. Since then, Kyle has pulled it out multiple times and we've replaced it because parts of the button begin to fail. We were regularly replacing it every 2-3 months until July 2013. His current button has been in for 7.5 months.

 Kyle had a feeding tube to keep him from aspirating his food and getting pneumonia. We were able to keep him healthy all through his first year until he was big enough and strong enough to have his repair surgery. We were even able to get him very chubby. It shocks me to look back through our pictures and see this super round face peering back at me.

Reflux and sickness have swung his weight to the other end of the pendulum, but he is thriving. Kyle loves to be outside, play with Carolyn and Blake, and is catching up developmentally.

Kyle doesn't spend a lot of time around children his own age, and it is easy for me to compare his progress to other babies that I see. I have to remind myself that he spent his first 14 months being held 10 hours a day to keep his food in him. It was a tough year, but it would have been so much worse without his tube.

Kyle's progress

We go see our therapist, Molly, weekly. We've spent hours talking about what we could do to help Kyle get over his plateau while Kyle refuses to try anything at therapy. Although Seattle Children's wasn't able to accept Kyle into their program, they have a therapist who has been so helpful to our therapist. She sent all sorts of support documents to Molly and helped her get everything lined up for us to do our own intensive tube wean at home with the support of our regular medical team.

We geared up for a mid-January wean and got doctors on board and lined up 2 appointments a day in Tualatin, 3 times a week for two weeks, etc. Then Kyle got sick right before Thanksgiving (sinus infection), mid-December (GI bug), and at Christmas (flu). The poor kid's weight was back to 20 pounds and we were struggling to feed him all of the required calories in a day either because of vomiting or he just wouldn't digest his food quick enough to get all his calories. This is a very familiar pattern when Kyle gets sick. It takes a long time for his system to recover. He had lost most of buffer he had for allowed weight loss under the plan.

Molly, Kim (his dietitan), and I all got together to discuss if January was too risky of a time to try the wean. Our big concern was that Kyle would lose weight (that was an expectation because of the plan) and then get sick and not have any reserves left on his body and end up in the hospital. Jeremy and I discussed the risks and benefits a lot and really felt it was best to put it off.

Thank goodness because two days after our planned start, Blake started vomiting, then Carolyn, then Kyle. It would have been disastrous for us to be in the middle of his wean.

We have a new tentative start date of March 31. Then we will be spending a lot of time at therapy appointments and with Kyle in a high chair. It would be lovely for this to get him off his tube feeds completely, but my main goal is for him to connect hunger with oral eating, and for him to feel more comfortable chewing. Kyle has made huge progress in the last few weeks, even without any tube holidays, regarding his comfort level with food. I can actually measure the food he swallows now. It is a small amount, usually about 10 grams a day/ but compared to 0 grams that is a nice uptick. His favorite foods are refried beans, spaghetti, and chicken quinoa chili. He actually drank smoothie twice last week--about a tablespoon. It is nice to feel like his therapy is paying off.

He often doesn't perform for Molly, so I take videos of his eating at home to show Molly what he's working on and the improvements he's made. I think we have more videos of Kyle eating than we do pictures of him doing everything else.