19 Mar A Little Clarification
Ok, so after a few questions from some of Keegan’s devoted fans, I realized that I needed to make some clarifications to the post about the plan. The question I was asked most was, “obviously, we’ve been trying to increase Keegan’s feeds and get him off of TPN for awhile now, so what’s so different now?” A few things actually, so here goes:
1. We switched formulas to one that has medium-chain triglycerides. Fat takes the longest for our intestines to digest; in order to properly absorb fats, they must slow down and “sit” in your intestines for a bit. When Keegan eats regular fats or even long-chain triglycerides (like his previous formula), his intestines can’t handle them and basically flush them out as fast as possible, resulting in diarrhea. We don’t know why he does this, but by switching to the new formula with fats that don’t have to “sit” so long in order to be digested, we have lessened the diarrhea…and hopefully increased his absorption of nutrients through his gut, not IV nutrition.
2. We altered his anti-vomiting medication to be smaller amounts more often during his feeds. One of the effects of the medication is that it “stretches” the stomach and allows it to accomodate more volume. This means more volume and less vomiting, especially overnight.
3. We added the oral vancomycin (antibiotic). When we started this med, I was skeptical that it would do anything because we were never able to identify any infection or unusual bacteria in his gut. However, the doctors here have treated several other heart transplant patients that developed intestinal problems, and all of them responded to the oral antibiotic. Usually this would be a 14-day course, but with these transplant kids, they’ve kept them on it for much longer at a lower dose and very, very slowly weaned it off as the gut adapted and healed. They honestly have no idea why it worked, but it did and really that’s all we need to know.
4. Lastly, Keegan might not be able to follow the plan as we’ve devised it. It’s very possible that we stop his TPN, and he can’t maintain his weight, hydration, or nutrient balance. In that case, we will put a permanent line, like the port he had before, back in for long-term TPN. We may also change the type of feeding tube he has to feed directly into his intestines or do more motility studies. We’ve simply agreed that the best way to try all this is by discharging him from the hospital but staying in Boston while he’s followed closely for awhile longer.
Hopefully that makes things make a little bit more sense. So far, he’s doing much better than ever before simply with his volume and calories. Today, we increased the caloric value of his formula to 26kcal, and he’s tolerated it just fine so far. He hasn’t been able to do that ever before! Yeah for Keegan! The day isn’t over yet though so please continue to pray that he will tolerate the feeds. If all goes well, we might be able to be discharged by the middle or end of next week. We’re working getting a place to stay and all the supplies we’ll need in line for our stay in Boston.
Thank you for your words of encouragement so far. It has been easy to “talk the talk” about putting our trust in the Lord that He would pull Keegan through this long and tedious illness, but there have been times where our faith has lagged. That’s when we are so grateful for your love and support. It lifts us up and reminds us that we were never promised an easy road, simply the grace and love of our Lord as we traveled upon it. Thanks again!