Sooo.....just when I think I've seen it all....
Noah woke up this morning with a very strong maple syrup smell coming from his diaper, skin, and hair. So much so that I thought I would question the therapists about it thinking that maybe there was something in his food yesterday that would have caused it. I really didn't think too much else about it, but when we got to the hospital, everyone within a 5 foot radius commented on how he smelled like pancakes. In fact, the entire ROOM would smell of maple syrup after he was in it. I called Jeannie at U of M and, like always, she went right to work on what could be going on. The immediate thought was Maple Syrup Urine Disease, something with the bodies inability to break down protein.., but his newborn screening was negative for this. She said he would need to be seen by a pediatric geneticist and soon! Luckily there was one on staff at St Mary's and he was immediately sent for blood and urine tests to look for metabolic disorders. He did so well with the blood test and as far as the urine, they had me put a u-bag on him and I am still waiting for a specimen! He would have done okay with that if I hadn't accidentally stuck things together that shouldn't have been and had to adjust it a few times (some things should be left to professionals!). It will be 5-7 days before we really know anything and at this point, all I can do is speculate, which gets me no where. I contemplated even writing about it all until we know more and then decided against it...a few extra prayers sure couldn't hurt! I am wondering if maybe this is in someway related to his edema issues as well. He gained a pound this week and I am sure that some of that is fluid related.
Before all of this syrup smelling business, we had been talking about scheduling an upper GI and swallow study to be completed before we leave the feeding clinic so we can get a better idea of what is going on with his stomach. He is doing better with the retching, but we have been keeping him at right around 3oz total for both food and formula. No sense in pushing him over the edge. He is doing so well with the food! We have had a few major meltdowns during sessions the past few days, but seriously, with everything else going on, I can't say I blame him. Plus, they are phasing me into the session and having me do 2 a day, so he seems to try and test me as much as possible. Typical 2-year-old!
We are heading home for the Thanksgiving holiday tomorrow after therapy, but I will update if I hear anything about his test results!