December 28, 2015

The road to U of M

If you've ever had to spend any amount of time delving into medical issues for yourself or one of your children, you are probably aware that there is a certain level of frustration that goes along with it. And when it comes to an adopted child, maybe it's just me, but I feel like the frustration level flies off the charts very quickly.

Several weeks ago, we reached a point with Meili's care providers where we felt like there was nothing more they could do for us. We are well aware that you can't really compare previously institutionalized, internationally adopted children to typical American kids. But we're also aware that despite the challenges adopted kids face, and barring any additional unforeseen issues, there should be a definite progression of development. This is what we seemed to be missing.

After our developmental specialist (who I thought could help us if anyone could) shrugged her shoulders and said "Well, I'm not really sure what to tell you..." for the second appointment in a row, I mentally threw in the towel. Jon and I talked, and we decided we would not see another specialist unless it was one who was familiar with the special needs of post-institutionalized kids. This led us to the University of Minnesota Adoption Medicine clinic. There are a handful of adoption clinics around the country, typically specializing in International Adoption. Since U of M is well-known, highly recommended and closest in proximity, we ended up there.

Our first appointment was the first week of December, and was to consist of a full initial evaluation with a physician, OT and neuropsychologist. Visiting with this team was unlike anything we've ever experienced before. We've never witnessed so many medical professionals working so well together, or visited with so many who just "get" adopted kids. It was a huge relief to visit with a physician who could see, without us trying to persuade her, what the issues were. And most of all, to find a team who was proactive in trying to figure them out.

Immediately at the initial evaluation, Meili's lack of weight gain (and other not-so-great GI symptoms) became a prime issue. Even though that wasn't why we were there, they asked us to stay an extra day for additional gastrointestinal testing, explaining that she likely can't develop cognitively or mentally if she's not making progress physically. Without going into too much detail, the result of the testing was somewhat inconclusive, but did show an enlarged portion of the intestine (duodenum) directly below the stomach. After consulting with several other specialists, it was suggested that we might be dealing with a lack of visceral fat surrounding the arteries and vessels in the abdominal area. This can cause those arteries and the spine to push into the intestine, causing blockages. Some of the medical terms we've been hearing are things like "mechanical intestinal blockage," and "superior mesenteric artery syndrome."

If this IS the issue, the "cure" is for Meili to gain fat. It can be surgically corrected, but going that route would result in a difficult, major surgery. Fast forward to today - all the specialists agreed that the best course of action was to begin tube-feedings to monitor calorie consumption and promote fat and muscle growth. While this feels somewhat like a slap-in-the-face to me as a mom who has been trying for months if not YEARS to fill Meili with as much high-quality nutrition as I possibly could, we feel like continuing with this plan is our best option at this point.

This morning Meili had an NJ (nasal-jujenum) tube inserted and we began feedings this afternoon. We will stay in the hospital for a few days to monitor electrolytes and other levels to make sure her body is tolerating high caloric feeds before we are allowed to go home. Once home the plan is to continue feeds and weighing-in every week with our regular pediatrician to make sure we are continuing to make progress.

Our biggest fear is that we'll get to the end of this process and come up empty handed. We were told that it is likely that this is the issue, but also that they don't find results for lack of growth in about 40% of children. So in the mean time, we're just here, going through the motions and trusting that these doctors, who we were so impressed with at the beginning, are doing the right thing for our little Meili.

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