my daughter's timing is impecible, ususally

                   This is one of my favorite pictures so far :-), this is a few days before surgery

    Kylie's timing has always been nothing short of amazing.  While Aubrey was pregnant with Kylie, there was a worry with Kylie's lungs being too damaged to function the longer she stayed in utero.  Kylie was missing the holes in her heart to allow blood to transfer into the lungs and back.  The doctors felt that fluid was going to back up in the lungs and damage them.  The longer she was inside the more damage they were worried about.  It became such concern that they weren't sure if they would be able to sustain herself when she was born.  They didn't want her to come too early, though, because the more she weighted the better she would do for surgery.  It was a balancing act with my daughter's life.  Kylie surprised everyone by coming a month early at 6lbs 5oz, with lungs that were damaged enough to require immediate intubation but not enough to be unable to support her through surgery!!  At two weeks of age, Kylie had done fairly well through her surgery but needed to be put on life support.  She had reached as far as she could on ECMO and it was time to take her off and see if she could support herself.  The first hour was GREAT and then she crashed and she crashed HARD.  They tried everything they could to try and support her, to make her stronger, to make her live, but her body was so damaged there was really nothing they could do.  At 3:00pm, they came to us and said if she hadn't turned around by 4:00pm, they would make her comfortable but that was all, they could do.  They had thrown in the towel, after a major fight but there was nothing else that could have been done.  So we sat and waited.  At 3:45, Kylie started picking back up and showing signs of improvement and, now, I have a beautiful little girl to write about.  Want a third example, I have more trust me, Kylie went home with a NG tube, a tube down her nose and throat to help her eat.  We went till about 7 months of Aubrey and I putting the tube down her and doing feedings through the tube.  She would barely take anything by mouth.  We tried everything we could think of to make her eat, even just pulling the tube during the day and making her hungry so she could see that food by mouth was a good thing.  Her weight plummeted and so did our spirits.  We, emotionally, couldn't take the torture of putting our daughter through the trauma of  holding her down and forcing a tube down her nose.  We finally, decided to do the surgery to put a permanent tube through the belly.  We were in presurgery consultation  and we had all but set a date for the surgery when all of a sudden, something clicked, and she just started eating.  She loved food, she couldn't get enough of it and we no longer had to do ANY TUBE!  I really think my daughter has an evil sense of humor and is seeing how long she can string me a long before she gives me an ulcer.  It's like a cat playing with a mouse before she eats it.   Guess which one, I am?   To make things even better, do you think she has stopped?  Nope!
    We are a couple of days post-op from pacemaker surgery.  We put in the device because of heart block caused by a heart cath hitting her already damaged AV NODE.  Heart Block caused her heart to be in a junctional rhythm and her rate could dip dangerously low.  They gave her over a week to recover from this and were shocked when she didn't.  We knew we were going to have to put it in anyways eventually, so we weren't incredibly depressed by the decision to put the device in.  The surgery was fairly successful and we just let her rest and recover while monitoring her vitals.  About 36hrs after surgery we noticed something, SHE SLIPPED BACK INTO NORMAL RHYTHM.  Her rate and rhythm were both good.  We continue to watch and she continues to stay, happily in a good rhythm.  Her rate dropped a little while she slept, last night, and the pace maker kicked in, but the doctors aren't too worried about it.  They say it is normal for a child her age to do that.  In fact, they are thinking about changing the settings on the pace maker so that it doesn't kick in until a lower rate.  Yeah, I can feel a hole burning in the lining of my stomach as we speak.
    Kylie is looking and acting more and more like herself.  She is walking and talking more, and she is smiling and laughing.  Her chest tubes are still draining decently, so those aren't coming out today and probably not tomorrow either.  With her history of drainage though, I think we may leave them in a day longer than necessary, just to be on the safe side.
    Our plan for the next two days are three fold.  First, we are going to let the chest tube drain, that is fairly straight forward enough.  Second, we are going to get her up and have her walk around.  She is acting more like herself, but her energy is not what it used to be, I mean who can blame her.  She used to be able to do laps around the unit, now we have to push her alittle to do one, and then she is ready for a little nap.  So, we are going to push her alittle to see if we can get her do some more.  It is good for her drainage to get her moving too,  Third, we are going to interrogate the pace maker.  What we are going to do is sit the pace maker in a dark room and shine a bright light in it's face and ask it a bunch of questions, like "where were you on the night of April 16th".  Whoops, sorry, living in my own little world again.  What they REALLY do is, hold a small device up to her abdomen and they are able to read the functionality of the pace maker.  It should be fairly straight forward.
     So here we wait and see.  Just, please, be praying that everything goes well.  We need to see her bowels move better.  Except for a small one today, she hasn't had one in about four days.  Granted, with everything she has been through her and her eating habits, or the lack there of, over the last few days, who can blame her.  Also be praying that the fluid, the thing that actually got us here in the first place, doesn't come back.  If it is going to, now would be about the time, it would.  Also, if it is going to come back, now would be great timing.  We are in a controlled setting and she is being watched and monitored very closely. Thanks for the prayers and just please be praying for all the kids on the unit, they can all be using it.

     There has been something on my heart that I feel compelled to share, as well.  This is directed, mostly to the families with special needs children, but anyone is welcome to read it., I won't stop you :-).  When we found out about Kylie's heart condition, almost three years ago, we wanted a cause.  We wanted to know what we did to cause out little one to have to fight so hard to have to survive.  Did we do something wrong while Aubrey was pregnant with Kylie.  Was God punishing us in some way, for sin that we had committed?  What did we do for our child to deserve such a hard life.  Over the years we have transitioned to the thought of what is Kylie being prepared for in her life that she needs to be conditioned this early for.  What purpose does she have in store for her to need to be this strong?  I think it is normal and expected for parents to wonder why this is happening to them and to their loved one.  We want answers, we demand them, and we agonize over them, and too often we don't get them.  Something, that I have come to realize over the last few years is that really, there is nothing you could have done to prevent or to cause it.  Unless you, while pregnant, were addicted to drugs or alchol there is no real way you could have prevented this and that there is no way you could have caused this, so, I encourage you to try and not berate yourself too much for what you have done or didn't do, because it isn't your fault.  Now I can say this, but you believing it is another story all together.  I would like to encourage you by saying, think of it this way. I am a believer in God's plan, that things happen for a reason.  I would encourage you to think that, out of all the people, in all of the ages on this planet God knew you were the one who could take care of His little angel the best.  He knew, that YOU had the strength, the skills, the compassion, and the where with all to step up and be a strong foundation for this little one.  I encourage you to see that in yourself, as well.  We have been given a gift in the form of these special needs beautiful children to see the wonder's of God creation.  We have been entrusted with an amazing and beautiful child that we have the ability and strength to take care of.  God wouldn't have given them to us if we didn't.  Also, this has been a growing and learning experience for us, the parents, as well.  We have gotten a new sense of what is important and we have been able to see honest to God miracles.  Also, now that we have taken a few steps in this journey, we are able to walk with others who have just started this journey.  We don't have all the answers, obviously, but we are able to be a comfort to others.  Now I am not saying that to say, be proud of us, more this is something that you will be able to do as well.  Trust me, too, being able to help someone else through this, is just as much a blessing to you, as it is to them.  God Bless you and we are praying for you/.

Guess I really can't get mad at the kid who got a new heart. THE REMAKE!!

       Yeah I have used the title before but, I am taking the route of Hollywood now a days.  Well, no I am not going to make this update from a comic (SPIDERMAN was good) or make a sequel (cough, Matrix)  out of a movie that has no buisness having a sequel to but I am going to do something else they do quite often, I am going to take an old update and make it completely new.  Take The A- TEAM and KYLIE throw it in a mixing bowl and a little sugar and VIOLA! there you go, you have this blog update, minus Liam Neeson ( one of my favorite actors, by the way).  So with out further ado, I give you this update, hold the applause.
    
       The last two days has been a roller coaster of emotion and action.  Kylie had her pacemaker surgery yesterday, I realize that a previous update had it for next week and we apologize for the confusion, but actually it almost wasn't too far off the mark. We were scheduled for surgery at 7:00am.  The way surgery day works is about six hours before they are no longer able to eat anything solid and then two hours before they become what is called NPO,  which is Latin for "you get NOTHING to eat, no matter how hungry you are".  So we got Kylie up at about 4:45am to give her some apple juice and to spend sometime with her before surgery.  Well at 6:00, a hour after she is NPO, and awake and playing in the play room we got some interesting news.  We were bumped, we weren't cancelled, we were just bumped for an undetermined amout of time.  Why did such a thing happen?  Who would be so selfish and self centered to steal a surgery spot from a two year old.  The culprit, a nine year old...his reason.... He got a new heart!!...I know, how selfish can you be...got to be real careful who I make that joke around.   That would be my luck, that this would be the one time that someone would take me seriously.  Before anyone starts hating me, we are thrilled and excited for him and we understood the need for us to be bumped.  Needless to say, they got priority but our surgeon still wanted ours done as well.  The only problem was is that there was no definite time, it could be twenty minutes or it could be four hours, so there was no way that we could safely feed her and still be good for surgery.  I am not saying that this was a problem, but I will say I had no idea my daughter knew so many different food words.  She was rather upset and there was no way to tell her what was going on or why we couldn't feed her.  They finally gave her a little something to relax and her and daddy got to take a nap, with her on top of me.  I was not complaining.
   At about 9:00, Kylie and I were awakened to hear that it was time.  We carried her down and got her situated, gave her some happy drugs and off they took her, at about 10am, for what would be, a supposed, three hour surgery.  It took them about an hour to finish getting her prepped and making the first cut.  The first lead went on great, not a problem at all.  The second one....well, that one is another story.  Let's just say that a three hour surgery was stretched to six hours because of that one lead and they are still not completely happy with it.  The pace maker will keep her rate from going too low, but she is still in the bad rhythm and with the leads the way they are it can't really correct it.  It wasn't for lack of trying, the one lead that they were n't happy  had to tried and placed EIGHT different times.   They are hoping that as the surgery swelling and inflmation goes down that the pick-up on the pace maker gets better.  As long as the connection stays the way it is or gets better, it is fine.  If it get worse then they will have to go back in and try to fix it.  There is some indication as well, that she may becoming out of heart block.  Her heart will, every so often, go in to a normal rhythm.  If that is the case, they will just leave the pacemaker in as a back-up.  that would be just like my daughter though.
     The problem with going back in, other than the obvious, is that they will have to crack her chest again.  This surgery, we were able to make an inscion along her side and thread the leads through her rib cage, it is less traumatic that way.  It is still very painful because they had to cut through her muscle.  So please be praying that things go well.
     So Kylie spent the night in the PCTU and Aubrey and I got to do something that we have not done in over three whole weeks, sleep in the same bed together. The hospital was amazingly generous and put us up in a hotel for 5 nights, which will hopefully be how long we have to be here.  We have a regular bed and a shower that we don't have to share.  Hey, I have slept on a couch or recliner for the last three weeks, I got nothing left to prove, so don't you judge me :-).  Though, Kylie had to go and ruin it and get out the PCTU and is now back on the general floor, so Aubrey and I will be switching back and forth, one of us will be sleeping with her, while the other will be using the hotel.  Once again, before you hate, I am kidding, I am very thankful that we are back on general floor.  Like I said, we are hoping that it is only for another few nights. The big things that will keep us here would be  the pace maker not working right and how long it would take for her drainage tube to stop draining.  I think we all remember how long they took to drain for the last surgery.  Please be praying that we get out soon, we have both caught ourselves calling this place HOME.  Also please be praying for the nine year old that stole our spot :-), we never had to get a new heart but we have had a few friends that have had to and it is such an awesome gift but an awesome amount of stress and new responsibility.  Also, please be praying for the family of the donor, while one family is celebrating one is grieving.
    Thanks to all of you for what you do for us.  Your prayers and support are amazing and are such an encouragement.  You don't know what a joy you are to us.  Good night and God Bless.

Kylie is out of surgery and extubated. She is resting comfortably for the most part in the ICU, though we are thinking about being transfered to moderate care in tommrow. They will be checking the pacemaker over the next few days. Be praying that it looks good, becuase if it doesn't work well, they have to go back in and fix it.

Guess I can't get too mad at the kid getting the new heart

    As I sit here and write this update Kylie is in surgery to get her pacemaker put in.  I know that we had written that it would be monday, sorry it is actually today.  Just got a report things are doing well.  We were supposed to go earlier but some 9 year old did something completely selfish and self-centered and bumped us because he was getting a new heart.  I know, I know how selfish can you be ;-).  Please pray for Kylie and for the family of the 9 year old as well.  I will let you know more as we do.

Quick update surgery Friday?

I know Ron has a much more interesting and informative post in the making, but he has been busy going back and forth to work and hasn't had time to finish it. So in the mean time I thought I would give you a quick less intersting update.We are still in the hospital and still in heart block. Kylie had what we think was a bug over this past weekend so she hasn't been eating or drinking much and most of what she has drank/ate she hasn't kept down (today has been better) so she is running low on energy and patients. We are planing to put a pacemaker in first thing Monday morning unless she comes out of the heart block sooner. They don't think she will come out of the heart block because today is day 10 and the longer you are in heart block the less likely it is you will come out. The pacemaker surgery will definetly be easier than her previous surgery, but still a serious thing as they will still have to open her chest to atatch the leads and the actual device will go in her belly which will requier an insion in her belly along with the one in her chest. Also there is the infection risk  and all the other risks that go along with surgery. Plus if the infection that we had in her belly ever comes back we have just given it a yellow brick road straight to her heart. Hopefully none of that will be a problem. The other potential issue will be the chest tube. We have heard everything from " it won't take long" to "well she is a fontan" refering to her last surgery and saying that we could be here for weeks just waiting on chest tube drainage to stop. But again we're hoping not to have that issue and to get to go home soon after surgery. We know she will be just fine this is just a pit stop. Sorry this update wasn't as entertaining as Ron's, but there it is. Well miss Kylie just woke up from nap so I need to go take care of her. Thanks so much for your thoughts and prayers. They mean a lot.

Hey everyone, this is the rough draft of the the first chapter of Kylie Half Hearted Hero.  I give it to you to look over and I wonder what you make of it.  Also, please be praying that God blesses this and makes something useful out of it.



What is it like having a child with CHD
It is Lasix, aspirin, duril...It's wondering...Lord what's your will?.... It's monitors and oxygen tanks...It's a constant reminder...to always give thanks...It's feeding tube, calories, needed weight gain...It's the drama of eating...and yes it's insane! It is the first time I held her...(I'd waited so long) It's knowing that I need...to help her grow strong...It's making a hospital... home for a while...It's seeing my reward...in every smile. It's checking her sats...as the feeding pump's beeping...It's knowing that there...is just no time for sleeping...It's caths, x-rays and boo-boos to kiss...It's normalcy...I sometimes miss...It's asking...do her nails look blue? It's cringing inside...at what she's been through. It's dozens of call to the pediatrician...(He knows me by name...I'm a mom on a mission) It's winters homebound...and hand sanitizer...It's knowing this journey...has made me much wiser. It's watching her sleeping...her breathing is steady...It's surgery day and I’ll never be ready. It's handing her over...(I'm still not prepared...) it's knowing her heart...must be repaired...It's waiting for news...on that long stressful day...It's..praying...It's hoping...that she will be okay. It's the wonderful friends...with whom I have connected...It's the bond that we share ...It was so unexpected.....It's the long faded scar....down my child's small chest...It's touching it gently...and knowing we are blessed...It's watching her chasing... a small butterfly...It's the moment I realized....I've stopped asking...why? It's the snowflakes that fall...on a cold winter's day.... (They remind me of those...who aren't with us today) It’s a brave little girl...who has been through so much pain....it's a special heart bear...or a frog in the rain...It's the need to remember ...we are all in this plight...It's their lives that remind us...we still need to fight! It's in pushing ahead amidst every sorrow....It is finding the strength to have hope for tomorrow. -Author Unknown
                At the risk of sounding cliché, it WAS a dark and stormy night, both outside our room at the Ronald McDonald House in Ann Arbor, Michigan but also in my spirit and in my heart.  This night, my mind was so overwhelmed with the happenings of the last 48 hours, that I couldn’t sleep on a bed that wasn’t mine,  in this room that didn’t belong to me, and in a place that I had never really been in.  As my wife slept beside me, I sat on the edge of the bed and watched as the big white flakes of snow covered the hospital campus and dealt with the big black flakes of confusion, insecurity, and fear blanketed my heart.  My newborn  daughter, my flesh and blood, and my two  day old charge that was my responsibility to protect, wasn’t where she should have been , she wasn’t right here.  She wasn’t sleep in this strange room with us, where I could watch over and where I could protect her.  She wasn’t even in the same house.  She was fifteen minutes away in one of the biggest hospitals I had ever seen, University of Michigan Hospital.  Instead of being in our bed or in a crib next to us, she was in a hospital bed up on the fifth floor in a special unit for children just like her.   She is lying there with a tube down her throat, to help her breathe, because her lungs weren’t well enough to support her.  Lying there with wires and tubes all over her weak little and jaundice little body, pumping medicine and support into her.  Even though she, and all the little ones like her, was born fighters she just wasn’t strong enough to win this battle without some help.  My child, who I have yet, to hold and who I won’t be able to hold for another three days fights and sleeps as peacefully, as one can in her position.
                So, here I sit, with my daughter there and my wife, who had just given birth two days ago, here.  The family that I had been tasked to defend, protect and provide for, were not only not together, but both were in need of care and attention.  Here I sit, in the darkroom, staring at the cold and white ice falling towards the ground, wrestling with the ice that grips me.  Here I sit wrestling with the coldness of uncertainty and fear of the questions that fill my head:
                What is going to happen?
                Is she going to make it?
                How did we get here?
                Am I up for this?  I am just a kid myself?
These and other questions swirl around my head like the snow swirling outside in the cold night air.  Sighing, I lie down beside my wife and hold her close.  I am not sure where we are going from here and have no idea what the future may hold.  I am amazed at where we have been, though, and I know two things for sure.  As I drift off to sleep, I make this silent promise to my family.  I, by the grace of God above, was going to help support my family through all of this and that my life, as I knew it, would never be the same.
                Hi, my name is Ron and I am the, lucky father of a miracle,  A miracle, in the form a two and a half year congenital heart special needs little girl named Kylie. I write this book to share my family’s story with parents, new and old, alike.  Maybe you are a parent of special needs little one and can relate to some of my journey.  If that is the case, then we can gain strength from each other.  Maybe you have just found out that you are going to be the parent of a special needs child.  I understand the loneliness, the stress, the anger, the frustration, the sadness, the joy and happiness, and just the overwhelming flood of emotions that you are experiencing.  I write this to show that you are not alone on this journey, that others have walked it before, are walking it now, and want to walk it with you.  I offer this as guide to you, to see what we have gone through and to experience what we have experienced.  It is my hope and prayer that you get some ideas, inspiration, strength, relief and (hopefully) a few laughs from me and my quirkiness.  Also, for all families, I hope that we all get a renewed appreciation for the joy and blessings that are all of our children.
                 There are two other things that might be nice to know about me.  First, I write this as my daughter is in the hospital in Ann Arbor for what I believe is our tenth stay.  We are in the hospital for fluid build-up, rhythm issues and a probable pacemaker.  We visit hospitals like most people visit amusement parks, we pack and anticipate.  We have been in Cleveland Clinic, St. Vincent’s in Toledo, and U of M in Ann Arbor, with visits ranging from the span of days to two months.  We have had too many doctor, therapies, and appointments to count.  This has become as much a part of our lives as feedings and diapers have been.
                Secondenly, I am what Webster defines as a “person who behaves awkwardly around other people and usually has unstylish hair, clothing, etc.  This type of person also goes by the wonderful label of DORK!   I have tried to reform, I have tried to be better but always slip back to my old self, so I have now resigned myself to the fact and truly enjoy it.  I have an interesting sense of humor, am slightly old fashioned, and almost everything I do, I do with the best of intentions.
                I thank you for taking an interest in family and our experiences.  I hope that you are able to relate to some of our experiences, laugh at a lot of them, and that you are able to take away something that you can use in your own life.  So without further ado, I welcome you to meet my little one, Kylie, my half hearted hero.

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.