With the fundoplication out of the way, we have (hopefully) solved her problems with reflux and aspiration. This is a huge relief because I feel like we have just been so lucky and have dodged the aspiration pneumonia bullet (common with nGD) that she could have so easily gotten at some point.
Even with all that is happening, the big question is what is causing her constipation and stomach pain. All her GI tests came back normal. Even the hiatal hernia found on endoscopy turned out to be just excess folded skin which the surgeon stitched.
She is on TPN (IV nutrition) now, and she is tolerating the intake great. She has been gassy a couple of times, which is a good sign. That is a good first step.
The next step would be starting g-tube feeds slowly and take it from there. These are the questions we need to find answers for…
- Was the intense pain she was having from the constipation? Now that she is cleaned out, will she have pain upon feeds?
- Will she become constipated again?
- Are there slow motility issues in her colon at work here?
- If she has trouble tolerating g-tube bolus feeds, would we have to put her on a pump? Last ditch resort to TPN?
- Will we need to change formulas? We have been on the same formula for a year, and it was only selected because that was what the hospital had on hand. Perhaps something with more fiber? Different nutrients? A higher calorie/ounce count so there is less volume?
- We have worked so hard over the past three years keeping her pain-free that maybe there is a chance that she is only having a moderate amount of pain but because she is not used to pain that it is overwhelming for her?
We are just now starting to tackle our original issues for what we came here for. Hopefully the pain she was having yesterday was mostly post-surgical, and we can start working on these issues.
But what if the pain persists? Then what? The hardest part of all this is not being able to tell Hannah what is going on and her not being able to tell us where it hurts.
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