Yesterday morning, Jenelle started screaming and crying unconsolably. Knowing she wasn't constipated, we had no idea what was wrong. She screamed in pain when I felt around her tummy, so I took her to the ER thinking it may have been a kidney stone or worse. Turns out, Jenelle has a pretty bad urinary tract infection (UTI), most likely caused by her "clean out!" (oh joy!) They placed her on a 10 day course anti-biotic. Once we got home I called UCLA to see if this would hold up our admission.
Because of the infection, UCLA told us not to come. It is their experience that it is difficult if not impossible to get a child into Ketosis while the child is fighting off infection. We are disappointed, but a little relieved not to be wasting time driving to LA or in the hospital (trying to look at the "bright" side!) Had we not diagnosed the UTI last night, we'd have probably found it today or tomorrow anyway
The team at UCLA will discuss Jenelle today and make a decision as to when we should plan to come back. The nurse who runs the diet is hoping for this coming Monday, but is not sure what the doctors will want. Worst case scenario is we'll have to wait until she finishes the course of antibiotics (so another 9 days!)
Additionally, the nurse informed me last night that Jenelle's bloodwork from last Monday indicated that her bi-carb level is still too low. This may give us time to lower her Topamax even more, and maybe start a bi-carb supplement (which may also help the infection!) I am at home today with Jenelle. At times she seems uncomfortable, but otherwise is doing great!
I'll keep you all posted as to our new start date! Thank you for the continued thoughts and prayers!
Monday, March 14, 2005
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