Today was a downward spiral for us. Sam has developed symptoms of MSUD again. He was very lethargic overnight and this morning, he is acidotic (which basically means that the PH level of his blood is too low), and his sweat smells like burned sugar again. After consulting with the metabolic specialist in Milwaukee today, they have ordered a new metabolic work up for Sam. We should have the results back on Monday. Their thought is that at the time they drew the blood for the first test he had not really eaten enough for the test to show positive. The blood for the second test was taken shortly after he was admitted to the ICU. At that time they were administering bi-carbonate to him to help raise his blood PH and they think that this may have caused a false negative. If this next test comes back negative again Sam will be moved to Children's Hospital in Milwaukee so that he can be closer to the Endocrinological specialists. Hopefully they will be able to determine what exactly Sam's issues are and we can start to move back towards a normal existence.
On the bright side of things, Sam has made some improvement throughout the day since they stopped feeding him again, he has been more alert and he appears to be feeling much better.
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