Taylor has has great couple of days. She is very active, smiling, wants to play and completely Oxygen free ! Her incision is healing nicely and her chest tube still draining away. Last evening we were moved to a freshly painted private room too! Doesn't get much better then that in the hospital!!!
Steps forward don't often come without a price however. Since Taylor's chest tube drainage has not significantly decreased over the last several days, tests were ordered for the second time today to see if her fluids were showing that she is leaking fat or lymph tissue. Though two days ago the test was negative, today it was overwhelmingly positive. Bummer...so what does this mean.
Well, we are still trying to understand and will have a clear picture once we see her surgeon again tomorrow morning. This is not an unusual surgical complication for the Fontan in kids. The Thoracic Lymph Duct is right in the area where surgeons have to cut through previous surgery's scar tissue to perform the procedure. Unfortunately the duct is not visible as it is very tiny. If it is nicked or stressed at all, it can leak and that is what is ocurring now.
Good news: The fact that Taylor has been eating like a horse (pizza, cheese, yogurt, guacomole, etc.) led us to see this problem. Bad news: The solution is a fat free diet in order to allow the lymph system to heal and not have to deal with processing fat at all. This should lead to a significant decrease in drainage and all will be well. Less than great news: This process is trial and error and could take quite a while (days to weeks). So in other words, we are hanging out at Fairfax for quite a while...and will keep you posted.
Please pray for a solution to this challenge and patience for me and Jason. :)
Thanks for all the yummy food from Cristen Dimas, Neeta Mehta, Kristi Latham and many others. We appreciate keeping us and the kids well cared for and well cared for.
Love to all...
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