We went into his one week follow up with GI and nutrition yesterday, it was quite an interesting appt to say the least. First was nutrition, he weighed in at 25.9 lbs....that is 3 lbs down from 3 weeks ago in the hospital so not good. He is still on 48 ml/hr but he is throwing up several times a day and still having diarrhea. The nutritionist suggested lowering the rate down to 38 ml/hr since in the hospital that was the point in which he was tolerating feeds without throwing up. She also suggested that I start him on some fish oil supplement to help with anti inflammatory issues in his GI tract.
When then saw the GI doctor, we didn't see his regular doctor but we saw I think my favorite dr, Dr. Gomez. He was disappointed with how Zach was doing and was very honest about what answers they had for him. His motility testing was normal so they don't think he has an actual motility issue. He said they had no clue really on why or what is causing his symptoms. We also had several long discussions about what to do, what it could be and what's next. He is going to consult with a surgeon in Ohio who he used to work with about whether Zach's roux en y surgery could be causing some problems. Also, they might end up sending Zach to another hospital for further opinions and treatments. He also mentioned maybe going to an intensive feeding program, the closest one is in Baltimore (Johns Hopkins) and it lasts 8 weeks inpatient. He also had to have some blood drawn to check medicine and iron levels.
He goes back in 1 week to be weighed again and discuss our options. If he has lost more weight he will be admitted again and have another central line placed for TPN supplements.
Hopefully Dr Gomez will have talked to the surgeon by then and we can come up with a plan that will work for Zach.