January 15, 2020

It’s been a few months since we updated, we’ve been waiting to see how things progress on Evee’s new medicine (Gattex). Her latest bout of poor motility seems to have advanced to the next level, requiring us to retrace our TPN tracks and restart them daily. Right before Christmas she was able to reduce fluids down to only 1-2 days per week! We were so close to being off TPN, yet not close enough. Soon, it took a lot more to recover for her, no longer could we simply have her drink a hydration drink, but she started emptying her stomach by venting her g-tube more and more often and required more IV hydration. She began to fluctuate weight-wise and her appetite and energy levels began to wane. We’ve now made it the 5 months on Gattex without a complete improvement of her bowels and Dr Mercer has indicated that she must have a motility issue we have yet to find a cause/pattern for and that for whatever reason, her guts seem to like to randomly “go sideways.” Our goal is to minimize the number of bouts if we can and find the happy medium where she is content during the good & bad days.

So, to check up on the function of her gut, we took images of Evee’s bowels with contrast through the g-tube last week and watched it make its way to her ostomy bag. Her bowels were very active and moved the contrast through in a decent amount of time, but curiously enough her stomach refilled with the contrast again after it had already emptied. The radiologist made note that some of her food from the evening before was still sitting in her stomach and that she does have slight dilation of the upper part of her bowel, but not near the amount before her last surgery. So, she wondered if her motility is messy enough that it keeps pushing her stool back into her stomach, the wrong way.

Dr Mercer was happy with the size of her bowel; however, with the symptoms she’s been having as well as the stomach-refill issue, he reaffirmed that there ultimately must be something wrong with her motility at times. One idea that we left clinic with today was to perhaps place a j-tube passed the site where she had previous dilation and see if feeding her this way will bypass any area that could be a potential motility problem. This will ultimately tell us if this area is the sole spot of our concerns or if her guts will be what they’re going to be. We hope to put Evelyn on the schedule for a j-tube placement sometime in early February, that way we all have time to think about it before this next step and cancel if something else is revealed. The procedure would be fairly simple, since during her last surgery he was able to place a few clips on her bowel and attach it to the abdominal wall so that it could be a guide if we ever wished to insert a tube. We hope to see him again in clinic in a couple weeks to make a final decision. We also plan to use IV Zofran for her occasional nausea to see if this helps her avoid emptying her g-tube, that way we can avoid dehydration if possible.

Meanwhile her foot that was bothering her seemed to get better, but then got worse again. We are thinking that it is a musculoskeletal issue because she is favoring her foot due to a plantar’s wart that is growing quickly. We’ve been treating this as well, but she has missed some school due to the pain. Thankfully, in the last few days, it has started to feel better again.

Traveling long distances is still difficult for Evee; even just 6 hours in the van during our Christmas travels seemed to have caused decreased motility. Her motility seems to be better when she is more active or laying down. We are taking the precautions with her guts being upside-down that she may be more susceptible to line infections, and it is more imperative to limit her distance from the hospital. Keeping a balance between spending time with friends and family to keep us going and her health is a continual challenge. We certainly cannot be so sure of anything, but this we do know: God is guiding and we are so fortunate to have the continued love and prayers of our dear friends and family.

Please continue to remember us weak ones here, that God will continue to be the giver of all that we need in the days ahead.