In the land of horses my daughter is an alcholic zebra

       There is an expression "When you hear hoof beats, you think horses and not zebra's."  The meaning of the saying is that when you are faced with a question that has a few different solutions, you can tend to go with the most obvious answer.  Seems like a fair piece of advice, so you don't beat your head against the wall trying to think of ever little possible solution, so you don't waste your time and your stress level.  The man, or woman (don't want to be sexist) seems to be a rather smart one, a person who has a fairly decent head on their shoulders.  Unfortunately, they are some one who has never met my daughter.
    Today we had another fluid tap, this one was therapeutic as well diagnostic.  I know that we were supposed to do it yesterday but that is a long story that involves a break down of communication with the sedation doctors, lack of scheduling, and lack of room.  Let's just make a long story short and say that we have a new rule, we are no longer going in NPO, nothing by mouth, until we have a SET time or it is EMERGENT.  Anyways, not only were we looking to see if there is any bacteria left in the fluid, but we were also trying to get as much of the fluid off her belly as possible.  We ended up taking another 350cc's off her belly.  Just my rough estimate but I am estimating that she has lost about 2lbs of fluid off of her belly.  It is really kind of nice, because she doesn't look pregnant anymore and her belly button doesn't pop out like the "FULLY COOKED" button on a Thanksgiving turkey.  Also, she seems to have a lot easier time getting around.  While the procedure was fairly straight forward, it was the phone call that we got during the procedure that really added some fun to our day.
   We got a call from Kylie's primary cardiologist back home, Dr. Suarez.  Suarez has followed Kylie and been her doctor before Kylie was even born.  He knows her, in and out, knows what she has been through, what she has habit of doing, and is an expert on all things Kylie Heart related.  To say that being able to talk to him was a stress reliever and a breath of fresh air, is like saying I like cherry cheese cake, for those of you who really know me, knows the validatity of that statement, I really LIKE cherry cheese cake, I ask for it on my birthday :-).   It was really great to hear from him, but he had some advice that really kind of threw us for a loop.  See, we have been here for 2 weeks and they are not completely sure where the fluid is coming from.  We have some ideas but nothing that you can put a stamp of certainty on.  In fact, some of the doc's aren't completely sure that it is cardiac.  Suarez is one of these doctors.  He is of the impression that it is a liver issue and not a heart issue.  He is not convinced that the pressures in the heart and the lack of the fenestration was great enough to cause the fluid storage.  He also believes that the  fluid collection presents more like an alcoholic with serosis of the liver, than a heart issue.  He freely says, that there is no real indication of liver issue, but with the heart function looking good, other than the heart block, that the heart is not the problem.  He also realizes though, that Kylie has done A LOT of things that there was NO indication for.  In his words "In a land of horses, Kylie is a Zebra, and apparently an alcholic one at that ( the last part I added)
So the plan was that we would both push for a liver biopsy, him from down there and us from up here.  We talked to the G.I. doctors, who are in charge of liver, and the cardiologists, who are main doc's for us up here.  The G.I. doc's politely said they would look into it and talk to Suarez, while giving me "Your a Moron" look with there eyes.  Cardiologists were a little nicer but still seems it be just as out outlandish.  I can't blame them, a liver biopsy can be a painful, invasive procedure, with a risk of bleeding and infection, and if there is no real indication for it, her labs and scans look normal, they are not inclined to do it.  On the other hand, I know and trust Dr. Suarez, I know that he is only looking for Kylie's best interest, that, with the exception of  Dr. Gladieux ( pediatrician), no doctor knows her better, and when he was describing it, it made sense.  So, I know how it sounds but I am going to push that we look into it and they have at least agreed to talk to Suarez and to entertain the idea.  That's all I ask.
     We also got a rather big peice of a news today, and a stay lengthener.  As you know, Kylie is in heart block and that is messing with her rhtym.  Some of the doctors are not comfortable with the rhytm that she is in so they are going to go a head with the pacemaker.  They are not comfortable with sending us home with the rhythm the way it is and they want to give us amble enough time to come out of the block, so they want to wait another 9 days to let the heart recover.  We won't do the pacemaker if she comes out of the block but,  each day that it stays in heart block it is less likely to come out.  Even if it does come out we are at an increased risk for screwy rhythms, so I am a little torn.  Do I want to have my family up here for that whole length of time, which isn't even including surgery and recovery, NO!  But, I also know that this is a necessary evil and if we don't do it now, we will be doing it the near future.  We can at least do it now, on our terms, and have it as a back-up, then later and have no other option.
   So here is where we stand, first we need to give 48 hours to see if the fluid grows any bacteria.  Since there is not enough tissue around her heart to actually put the pace maker there the doctors are going to put the device in her abdomen and attach leads from the device to her heart, like the altenator on a car.  See where I am going with this, if that infection is still there we have just given it a yellow brickroad of a pathway all the way to the emerald city.  Only problem is that, at this city, there is no Wizard (man behind the curtain) but an already damaged heart.  So, they are going to be certain the infection is gone, preliminary reports look good.  Second, they have checked, double checked, and triple checked the fluid. they are 99% sure it is cardiac.  They have also gone through ever scan and blood work up on the liver, and have found no indication of any damage.  They are not going to do any biopsy at this time, they are talking to Dr. Suarez and seeing what he wants to do.  Also, fortunatetly, the head G.I. here is collegues with our G.I. doc back home (Dr, Nadoff) and they will both be watching Kylie closely.  I have a picture in my head of two very intelligent men staring very intently at my daughter's stomach, I am sure it is a bit more scientific than that, at least I hope.   Since we are here for so long too, they are going to keep an eye on the belly and if it starts gaining the fluid again, they will know for sure it isn't the heart.  So here we be, we are kind of a captive audience.
   Please pray for us though, all joking aside, this will be very difficult for us.  I have to leave work and, it won't be very feasible to come up here as often.  It will be Aubrey up here managing everything by herself.  While I know how strong and capable a woman she is, and I am not just saying it because she reads all my posts, this is going to be a big strain on her.   So thanks for your prayers and support.  God bless and good night.