Test results are in...

First, I want to thank everyone for the wonderful support, positive thoughts, and prayers. It is hard to explain how much it means that, even after 2.5 years, friends, family and people unknown to us still keep us in their thoughts when we hit a bump in the road.

Today the doctor called, and what I feared happened: Loki cannot be diagnosed with pathological reflux. It means that, other than that we went through hell and back, the test basically did not conclude that Loki refluxes acidic stomach content more than any healthy person. The explanation of why he vomits as much as he does, and why it gets worse when we stop acid suppressants is somewhat of a mystery. Why, oh, why am I not surprised about this? In Loki's story it makes so much sense to not make sense!

However, the gastroenterologist explained that, although not very common, acid suppressants (such as the two drugs that he takes) can have a positive impact on non-pathological reflux. In addition, we discussed the possibility that for unknown reasons Loki may be sensitive to normal levels of acidity, and thus the regular medication has some effect as well.

We are frustrated to not have answers, especially after a disastrous week that really set Loki back. We are worried that the likelihood of answers is becoming slimmer with each test. Yet some solace was provided as well. Basically, the plan of action won't differ much from what would have happened were the test positive. With one major difference: the chance of a future Nissen fundoplication has become rather slim. One less surgery is not bad. One less opportunity to solve the issue is a little nerve wrecking, however.

What about pulling processed food out of Loki's stomach to home-test the motility of Loki's stomach? After two days I realized the results were rather inconsistent. At times I was able to pull up quite some food after hours of processing. On the other hand, on several occasions, the feeding tube immediately "sucked" into a vacuum. The doctor's explanation is that the positioning of the mickey button is probably such that the unless the stomach is "overflowing" the lining of the stomach gets sucked against the opening of the button and prevents any fluid and food to be pulled out.

Essentially, all we know is that Loki vomits frequently, less when on medication, more right after or during meals. The first step is to increase one of his reflux medication. If this does not significantly reduce the vomiting--and we really hope it will--Motillium is next (a drug to improve stomach motility).

The nephrologist was consulted, and the good news is that Loki's kidney is considered to be functioning "relatively" well. Loki is more easily dehydrated and has some on-and-off protienuria, which can cause serious long term damage. Apparently, though, the nephrologist does not think there is a contraindication against the usage of motillity drugs. If there is no significant effect after prescribing Motillium--and again we really hope there is--a gastroscopy including a biopsy would be next. Much further than that, we won't be thinking, because by then we would be done exploring and treating, unless the decision of a Nissen fundoplication is made based on negative tests.

Looking on the bright side, Loki does not suffer from pathological reflux. On the darker side, he still presents the exact same symptoms as any child who does receive the diagnosis. On the bright side, Loki may still grow out of this, and/or any of the medications may still make a difference. On the less bright side, if none of this works--and there is a realistic chance that is the case--Loki will continue a rough, bumpy road where food, eating, and hydrating remain themes for many years to come.

Ending on a positive note, Loki ate quite some food by mouth today. Yes, he did throw up almost his complete second tube feeding, but four hours later he was hungry and ate: 3 cookies, 50 grams of fruit/veggie smoothie, and approximately 50 grams of pureed pasta and veggies. This proves once again that the little guy is significantly more resilient than his mama!

Finally, before I forget, with water resistant band aid and some anti-biotic skin cleanser we are allowed to try out lake and river splashing this summer. Sometimes it is just a matter of asking enough doctors until one comes with a satisfying, yet reasonable and safe, answer!