Tori’s follow-up appointment with pediatric surgery today went well. She slept through most of it. 😄
This was to discuss the results of the upper G.I. study that was conducted last week that showed that her Nissen is still intact, but that she was indeed refluxing past the wrap.
He was pleased with how the Nissen is working because he said that it did what it was supposed to do during the study: it was filled to capacity and, instead of her stomach “blowing up” (his words), it was forcing some of the barium to reflux up into her esophagus.
Essentially, the issue seems to be that her stomach is emptying slower than they would like. Since she is throwing up milk sometimes two hours after her feeds, that is his best hypothesis without doing invasive testing. He said her stomach should be pretty empty after an hour, but given the nature of Krabbe it makes sense that it would be slowing down.
The surgeon presented five options, and we are going to start with the least invasive option: medicine.
We are going to start by giving her a tiny dose that will help her stomach empty faster without any other changes.
Plan B is to adjust her feeds to be more continuous overnight (to start) – this means a slow rate over a much longer period of time, like 18 hours (not ideal, but better than the other three options).
Plans C-E are not as ideal so we won’t discuss those now 😉 Those are last resort plans.
We will start the medicine as soon as we can get it and we are praying that it will resolve her issue with throwing up. ❤️
Even So, Joy 
Been there…done most of that. Nathan’s digestive system was very, very slow, and we resorted to several things: 1) medicine–we put him on a drug that might not ever be used for children now because of the potential side effects, but it worked well, along with having him on pump feeds 24 hours/day (with time off here and there. We ran the pump quite slowly (between 30 and 45cc’s per hour, depending on him). The drug we used for him was Reglan (metoclopramide). He had some troubling side-effects after the first dose, but we halved it (to miniscule) and he was fine…took it from age 6 until the end of his life at 14. Telling you this just in case that’s the drug your doctor chose for Tori. It’s not usually given to children, but it was the only solution for Nathan at that time.
Praying this does the trick and she can be more comfortable!
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Prayers for the whole family
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We continue to pray for your continued strength and wisdom during this journey. You are Blessed with such a strong faith in God’s plan…and your love for Tori is a Testimony to the precious gift of life. Thank you once again for sharing your lives with us…….Tori’s life here on earth and the way you are dealing with her journey has changed lives. To God be the Glory.
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