Kinsley: Update 7.25.17

As some of you know, Kinsley had a video swallow test and an esophogram yesterday, July 24th. Today I met with a neonatologist and the feeding therapist to discuss the results and the course of action we need to take next.

The results of the esophogram show, in simple terms, that where Kinsley’s esophagus was sewn together one month ago in her first surgery, that area has healed and is very narrow now. The video clearly shows the food coming to that point and then getting stuck because it is too narrow to go through; it looks much like an hourglass if you can imagine that. The food is piling up before the tiny opening and then slowly dripping through the surgically repaired area. This is dangerous because the food could build up so far that Kinsley could choke, or spit up which could irritate the supraglottoplasty surgery that she had on her airway July 20th. Because of this, the Neonatolgist, ENT and the feeding therapist have decided it best to stop oral feeds for the time being.

Even if this was not an issue, the video swallow test shows another reason oral feeds are not safe at this time: the feeding therapist explained that Kinsley is swallowing food and some of it is going into her trachea where it could go into her lungs and cause pneumonia or other respiratory infections which could be life threatening at this point in her development.

These two issues must be fixed before Kinsley will be able to feed orally and without her feeding tube.

To solve the narrowing of her esophagus at the surgical repair site, Kinsley will have to have another surgical procedure, where she will be put under and a balloon will be inserted into her esophagus and blown up to try to stretch it and ultimately make it wide enough for food to pass through without getting stuck and building up.
To fix the issue of her swallowing and food going down the wrong tube, she will have to go through feeding therapy for 8 weeks where she will be fed 10-15 milliliters by a feeding therapist once a day every single day for about 2 months. She cannot begin this therapy until her dilations to her esophagus are complete. She will have her first dilation in two weeks as the surgeon wants to be sure her last surgery has healed properly. After the first dilation the doctors will wait a couple weeks to see how successful the dilation was; sometimes multiple dilations need to be done to open the esophagus sufficiently because it can close back up. As long as Kinsley’s surgical repair site isn’t too fragile and the tissues can handle being dilated again without risk of rupture, they will perform as many dilations as necessary. Only when the dilations are complete will she begin therapy.

While the dilations have to be done at DeVos, the 8 weeks of therapy can be done at home. Unfortunately, the therapy once a day is the only time she will be able to feed orally, which means she will come home with a feeding tube in her nose. There is talk of putting in a Gtube in her stomach, but she will still have a tube in her nose because it is holding her esophagus open and preventing it from becoming so narrow it closes off. We will feed her through the tube except once a day when a feeding therapist from McLaren Hospital in Petoskey will come to our home and do the therapy with us and Kinsley. After 8 weeks she will have another swallow test. If she passes it (no food is found going into her trachea) then she will no longer need to be tube fed, and we can finally go to oral feeds.

We have a long road ahead. At least one month and a half at the hospital for the dilations, and possibly longer if she needs more than 1 or 2 dilations. Then two more months at home of tube feeding and feeding therapy.

Kinsley is one month old today. According to this plan as of right now, she will be 2.5 months or older when we are able to go home. (Obviously subject to change).

Please keep praying and sharing our story.

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