Six weeks after first broaching the topic of a feeding tube, and perhaps fundoplication, Spitenup now says we should keep up our efforts to increase Hope's caloric intake but otherwise keep on trucking. Her weight, about 8 1/2 pounds, at 11 months is on the same slow growth curve she's followed since birth, according to Spitenup.
We have a lot of fun poking fun at Spitenup. He's a crazy, bedeviling fellow. But we also believe he hasn't done us wrong so far. For all our frustrations, the pediatrician who prefers metaphors involving prostitutes is actually pretty good.
Spitenup is clearly biased against fundoplications, a surgery that involves wrapping part of the stomach around the esophagus to limit reflux. He claims they cause as many problems as they solve, including bloat, inability to burp and retching. Spitenup instead prefers slowly boosting caloric intakes, waiting and monitoring. As a rule, he's against the surgery until kids are at least 18 months.
So we're stumped. Our inclination is to wait for another six weeks, and then perhaps seek a second opinion. After plateauing for a month, we do think Hope is again gaining weight.
But we're throwing it out there for the CdLS parents who follow the blog: What are the benefits, drawbacks of fundoplications and G-Tubes? Good, bad, indifferent, amusing stories, we welcome your input.
And thanks.
4 comments:
well, he is right. it is very hard for mason to burp, however he has burped a couple of times on his own...but we now think that it may be related to his fundo slipping. that is the big draw back.. they often have to be done more than once (according to our g.i. and surgeon).
i think that the fundo is very necessary and important if the child isn't able to eat or drink and to 'help' with reflux.. and as far as the gagging and wretching, it does subside once the child is used to the fundo... and the bloating is easily remedied (in our case) by simply burping mason as much as possible..
but if you can wait until she is older to see how she does, the surgery is a lot more successful (again, so we've heard) on older, bigger children.
also, reflux can happen through an intact nissen... so it may not be the cure all in that department.
you have done so good with her so far. i would definately see how things stand in 6 weeks...but know that i would do it all over again (and may very well have to) because mason couldn't eat on his own AT ALL.. but i do agree with spitenup in a lot of ways.
I think I will email you my full answer to this question or this will be too long.
We had the Nissen done after MUCH MUCH deliberation. In the end, we are so happy with it. We knew we needed a g-tube, but the Nissen does have some significant risk to consider.
However, I would look at it in light of Hope's larygomalacia, her ability to feed on her own, and whether they think they could do it laproscopically or not.
You sure have our appreciation for the care you take with these agonizing decisions. It must be so hard!
On another note, the photos and videos are great! Those pink hearing aids become her, and that smiling face is easily the best thing I've seen in a week!
Love from Maine,
Grandma K.
Thanks for your help, you guys! We really appreciate it. We're thinking now that we may wait and see. The downsides seem a bit steeper than we imagined. We're grateful for your input.
Joel and Mo
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