Three months in Phoenix, one week in St. Louis! We have been discharged with a diagnosis, Ethan gained a pound in six days in St. Louis, and he is eating by mouth. Actually, he is eating everything by mouth. If you enter a room with either food or drink in your possession, he is immediately interested in partaking and will be sure he lets you know. He's loving the pancakes too!
His diagnosis is called infant Refusal to Eat (RTE). This sounds like a simple enough problem, but can actually be quite an issue as we have learned. Doctor's are not fully sure why it happens, but there is speculation regarding neurological triggers as well as other things. It's a long and drawn out story, but the RTE combined with substantial over-treatment in Phoenix led to more complicated issues. Here's the rundown:
1. Ethan likely needs more calories in the day than the average munchkin which is why he failed to gain weight initially.
2. Combined with the refusal to take solids for some reason (likely reflux aspiration), he began to lose weight.
3. Then we started treatment at Phoenix Children's which led to feeding him into his intestine.
4. "House" in St. Louis stated that intestine feedings are often not effective, especially when done improperly.
5. Phoenix did them improperly -- in that they were pumping as much as 2000 calories per day into his intestine which led to malabsorption and renal issues and further "shutting down" his system.
6. St. Louis immediately had concern with the amount of calories and adjusted them Day 1. Ever since he has been taking less calories into his intestine and has been eating food by mouth, he's been gaining weight.
7. In one week, we are completely off of the central line TPN feeding, and are now feeding by mouth and are feeding by drip into his stomach only, not his intestine.
8. He is tolerating very well and is off of all medication.
9. We are not out of the woods. He could have a G-tube line feeding into his stomach for as little as months and as long as years. This is a serious issue that can re-occur, and we have been warned that he could eat like a horse and then shut down again for no apparent reason.
There is much, much more to this story and this is definitely a Reader's Digest version of the story. When we get home and settled, I will provide a longer version on the blog. What we learned is that there is not only a significant difference in the quality of doctors but also in the approach to diagnostics and care. I will say that Dr. Keating ("House") lived up to his reputation and we can't imagine not having come to St. Louis.
I must also give a special mention to our pediatrician, Dr. Jeff Siegel. He was the driving force behind us looking for care elsewhere, and demonstrated not only unbelievable care, but he seemed to be significantly more knowledgeable than many of the hospital doc's we worked with.
I must also mention that our friends and family have extended themselves in ways unimaginable. Our church family has shown that the roots of a church extend far beyond the shadow of it's branches, and their love and support is a testimony to how God does extraordinary things through ordinary means.
Unlike our other discharges which left us feeling incomplete and insecure, this one seems much more permanent and the change in Ethan in one week is unbelievable. His eyes, skin tone, attitude and energy are all significantly improved and his spirit is as pure as ever.
We hope this to be the beginning of a full recovery for Ethan. Like Dr. Siegel said, if this diagnosis sticks, it's a home run. All of the other possibilities at the top of his list didn't have good outcomes.
So with hope and excitement, we conclude this update. . . . . . We'll be coming home from the midwest on Friday, July 9th!
Matt (and Robin, Jacob, Nicholas, Andrew, and Ethan)