When Ella was in the NICU and just a week or so old, the doctor who had been working with her pulled Joe and I aside. He told us what little he knew about EB, how she had already beaten many odds that he knew, and he first mentioned a word that we would come to know all too well…g-tube. I had never heard of a g-tube before then, nor had I ever known anyone who had one (or if I did they never told me they had it). He explained that it’s very common for kids with RDEB to need a g-tube, and that while Ella was eating fine at that moment, just be aware that it might be something down the road. As Ella grew, the more and more kids we knew who had g-tubes. It became clear that within the RDEB community, it was almost more surprising for a kid NOT to have a g-tube than it was for a kid to have one.
- This surgery is not a surprise to us. Like I said, we’ve known since Ella was a baby that this was most likely in our future. We’re not upset that she has to get this surgery. In fact, we’re all relieved. Joe and I are relieved that her body is finally going to have all the nourishment it needs to do all that it needs to do. Ella is more than relieved that she’s not going to have to take yucky medicine ever again! (She says that this is the best news!) This is going to be GOOD for her! Joe and I were talking yesterday about Ella’s life verse, John 10:10, “The thief comes only to steal and kill and destroy, but I have come that you may have life and have it to the full!” This g-tube, in a lot of ways, is going to give Ella LIFE TO THE FULL! She’ll have more energy, gain weight, and likely her wounds will heal faster.
- Ella does eat…the g-tube isn’t because she’s not eating. Fortunately Ella doesn’t face the eating issues that a lot of EB kids have. Yes, she had throat surgery last summer, but that was the first step to getting a g-tube. We wanted to see if that would help her gain weight before we went the g-tube route. Ella eats, on average, between 1000-1200 calories a day, but her body needs 1600 to do all that it needs to do (heal, function, grow, learn, etc.) She just can’t eat that much in a day.
- Ella will still eat “normal” during the day. Since eating isn’t the problem, Ella will continue to function normally during the day. She loves food and there is no way we’re going to take the joy of eating away from her! She will eat lunch at school with her friends, and will eat breakfast and dinner with us as a family. She will just receive additional supplements overnight to ensure that her body has all of the calories it needs.
- If at some point there is a cure, or Ella starts eating enough to sustain her weight, she could get rid of the g-tube. I know many teenagers and young adults with EB who still have their g-tubes, but I also know several who have had them removed.
- Our hope is that Ella will start to gain weight immediately. I talked to a mom recently and her son gained 5 pounds in 5 weeks. Within 6 months he had gained 10 pounds. I can hardly imagine Ella with that kind of weight on her body! I haven’t had to buy her new clothes in almost 2 years, so I guess I’m going to have to start hitting up consignment stores (I'll accept hand me downs too)! Currently Ella is in the 3rd percentile. We’re optimistic that by the time she starts kindergarten in August she’ll at least be on the percentile chart.
- We aren’t exactly sure how her recovery will be. I’ve talked to parents who have reported that in as little as 3 days their kids were back to “normal” and seemed to be completely fine. Most parents I talked to said their kids were back in school within a week. Obviously we hope to have Ella back to her old self as soon as possible, but we’re not going to push her.
- At this point, Ella knows what she needs to know. We have told her that she’s getting a very fancy new belly button and that with this belly button her yucky medicine will go straight into her tummy and she won’t have to taste it. As the surgery gets closer we’ll explain more to her. And after the surgery we’ll take great effort to explain how important this is for her body. We don’t want Ella to feel like something is wrong with her because she has this, and we don’t want her to feel “weird” because of it. Please choose your words carefully when asking about it and we’ll all work hard to keep this as positive as possible.