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.

READY, SET, HIKE !!!

   When you have a body shaped like the one I do, your choice of sports can be some what limited.  No one has ever looked at me and said "were you ever gymnast?"  That is a scary thought, could you imagine me in tights.  They have also never asked me if I play basketball, trust me, I look more like a basketBALL, then a basketball PLAYER.  Nope, when people look at me, the question I get asked is, did you play foot ball?  The answer to that question is "why yes I did"  I never played on anything as organized as an official team, though.  No, my glory days were me and a bunch of friends tearing up the fields playing football after class, trying to kill each other in good Christian love and kindness.  It was great fun, great stress reliever, and something that I could go for right now :-).  One of the fun things about playing those pick-up games of football is the fact that you get a chance to be every position.  You can be offense and defense, you can be a rusher or a receiver, you can be a quarter back, or a blocker.  Blocker is an interesting position, it can be your best friend or your worst enemy.  If the blocker is on your side he is a hedge of protection against your oncoming enemies.  If he is against you, he is a tidal wave of force coming to crash down on you with everything he has to stop your momentum.  Kylie has a problem with a blocker right now.  "But how can that be?" you ask "she is built more like a footBALL then a foot ball PLAYER!  Kylie doesn't have a problem with a foot ball blocker, she is having problems with something called a HEART BLOCK.
     Kylie's heart block is caused when she had the cath on Monday.  It is believed that the catheter hit the A.V. node in the heart, which helps regulate the beating of the heart.  With Kylie's heart condition and with the rhythm problems she already has, it was already easily damageable.  When the catheter his the node it bruised it an caused it to no longer function properly.  Her heart is beating, but not in sync and not function as it should.  It has caused her rhythm to be all out of whack, that is a technical medical term, and her rate to be slower.  The longer that she is in heart block the less likely they are to come out of it and since she has been in it since Monday, it is becoming less and less likely for her to come out of it.  Not saying she can't but it becomes increasingly difficult.  This isn't life threatening, but could be  detrimental to Kylie's health.  I am thinking that they are going to give until Monday to see if her full function comes back and if it doesn't we are going to talk options and it seems like the front runner is a pace maker.  Pacemaker was something we have been talking about before, for her cruddy (another medical term) rhythm.  This takes the time table from years though to days and it would be another surgery.  Most pace makers can be slipped under the skin, but with Kylie's heart anatomy, it would be another surgery. So here we sit and wait.
    We, also, may need to go back on to the antibiotics again, as well.  The more the G.I. people think about the infection that my daughter may have had, the more they are seeming to want to put her back on the antibiotics.  Given the fact, that we may have an upcoming surgery and that the pacemaker device itself, may rest right where the infection is/was, they want to make sure it is all gone.  They are leaning towards a three week antibiotic regime.  We aren't sure of how we want to spend those three weeks, though.  Do we want to do it as an I.V. regime here, or as an I.V. or oral medication at home.  After everything we have been through I am confident that my wife is more than capable of handling it.  No I am not being a Chauvinistic Pig who believes that it is only the woman's job to take care of the kid ( so don't throw things at me), just giving credit where it is do.  I like to think that I help, but my wife is the real hero and the real brains behind our daughter and her care.  But, even though I am confident, they may feel more comfortable with doing it here.  So as it stands right now, best case scenario, we are getting out on Monday, worst case scenario, we are looking at, AT LEAST, three more weeks.,
    We are trying to make things more comfortable for Kylie, as well.  With the possibility of the antibiotics again and with the continuation  of  her blood draws mixed in with , how shall we say, her DEEP DISLIKE of needle sticks and the fact the it is getting harder and harder to stick her, they are having a hard time finding spots, we are thinking about putting in a PIC line.  A PIC line is a stronger I.V., one that is meant to be in longer and has tube that, actually, rests in the vein.  It would be an easier and more readily accessible point for med's
    It is getting hard at times to keep the spirits up.  On the one hand I want to keep my daughter here and get her better, but on the other hand I want my family home.  You get disgusted with the situation and then you feel guilty about being disgusted.  It is easy to draw inward and close off.  It is at these times, the choice needs to be made, do you succumb to the dark feelings and thoughts or do you choose to find the good things.  I believe that to not visit  the frustration for awhile is unrealistic and unhealthy.  To deny those feelings is to deny a part of yourself and these are feelings that must be dealt with before feelings of bitterness and anger take its place.   Try not to loose sight of the of the other heart families around you.  They are part of your family, now.  Granted you are going to be closer to some than others, that is the case with every family.  But, I encourage you to open yourselves to the families, they will be a sense of support, comfort and strength that you will need to go through this.  Remember, this is a marathon, not a sprint.  Please pray for me to practice what I say. :-).

Kylie vs Moving day

    Moving day is always a stressful day, sometimes it is exciting, but over all it can be very stressful.  You go from a very familiar comfortable place to a new unfamiliar place, with strange neighbors.  You have to get to know new people and make sure they aren't grumpy, anti-social or strange, though some would argue you can't be stranger than me, and they wonder the same about you. Also it is never easy to see all of the items that make your house a home in boxes and in disarray.  It is even less fun when that day is unplanned and unforeseen.  Usually, things work themselves out, but for the most part...Moving stinks like spoiled milk.  Can you guess what we did today?  I will give you three guess and the first two don't count.
   That's right we moved...good guess.  The only problem is that we haven't moved home.   We are now in Moderate Care, which (as the name suggests) is in between ICU and general floor, they were ever so creative when they named it, weren' they.  So how does one go from, yesterday, being let out of the hospital on a day pass and then today being in Moderate Care hooked up to monitors.  I am glad you asked, well I guess you didn't really ask, I more wrote...but I am sure the intent was there.....Anyways.
   We were scheduled to do the heart cath today and today was the day that we were going to get answers.  I like answers, they are comforting.  If answers were a bed, I would get a great night sleep and wake up rested.  Well, we got answers and a little surprise.  I like surprises...overtime on a paycheck that I forgot about, my wife surprising me with my favorite dinner, things like that, those surprises are fun.  This one wasn't so fun.   I will tell you the surprise but let me tell you the whole story first.  I am writing this update so I can do things like that and get away with it.
    They did the heart cath to find out the pressures in the heart.  The thought was that if the pressures were too high that could be causing the heart to work too hard and cause it to produce the excess fluid.  If the pressures were high then they would open the fenestration up which would, hopefully, help relieve the pressure.  Basically, if Kylie had a pressure level of 10 or higher, it was certain that the pressure was too great and they would make the hole.  If Kylie had a a pressure of 4 or lower it was certain that the pressure wasn't the problem and Kylie wouldn't need the fenestration.  Can you guess what the fluid level was, let me give you a hint...it wasn't 10 and it wasn't 4 but if you take those two number and subtract them....you would get our number.  That's right we had six, we were in the gray area and it was up to the doctor.  Basically, if you think of Kylie as a stop light, we were looking for a red or green light and she gave us a flashing yellow light.  The doctor felt it would be in her best interest to get the fenestration, so he did.  The real fun is what happened next, as the doctor was finishing up the hole Kylie's heart decided to take a break and become rather lazy.  It went from 70-80 beats a min to 43, which kind of freaked the doctor out a bit and bought us a new room.  What they think happen is that Kylie's rhythm is already alittle screwy, remember we are looking at a pace maker in 8-12 years, so it is already susceptible to damage.  As far as I can gather, there is a portion of the heart called the AV node that regulates the rhythm and, being already weak, is not as protected as it could be.  The thought is that the cath hit the node and bruised it sending it into funky rhythm, at first I was angry and wanted to blame the doctor, but from the sounds of it, there was no way they could have known ( the thing is microscopic), if that is the cause at all.  They moved Kylie to moderate care so they can keep a better eye on her and have her hooked up to the monitors to keep an eye on the heart.  The heart can heal itself with time or it might not.  Let me be clear: THIS IS NOT LIFE THREATENING.  Just something we need to keep an eye on and see what the extent of it is.  We are going to talk to the rhythm doctors in the morning,  HA rhythm doctors make them sound more like the Blues Brothers than anything else :-).  I am sure they have a more technical name, but I have no idea what it is.  We are also going to run a few tests to see what the heart looks like, an electrocardiogram and wait.  This could resolve itself overnight, it could be a week to ten days or it could not at all.
   So here is where we stand.  We do not have a definite idea where the fluid is coming from.  We may never know, some doctors aren't even sure if it is the heart to begin with.  We have reopened the fenestration and are more than likely going to continue with Diuretics to keep working on the fluid.  The heart cathFONTAINS just collect fluid.  Also we are going to be meeting with the BLUES BROTHERS, yep the name has stuck and see what we are going to do about the rhythm.  We also need to meet with the Kidney Doctors to discuss diuretics, remember she a history of kidney stones which, we feel are caused by too much diuretics.   So tomorrow should be fun :-), never a boring day.
   On a happy but bittersweet topic.  Two of our little friends, Hannah and Owen look like they are going home in the A.M.   They both got their chest tubes pulled today and if they have a good X-ray tomorrow, then they can go home.  While we are happy to see them go, it is sad to see friends of ours go while we are still...Lord willing, we will follow in their footsteps soon.  God bless and good night.

A few days in one post

Sorry there hasn't been a post in a few days, we have been busy doing.... well not much productive. We finished her antibiotics on Friday evening so for the last couple of days we really have just been monotoring her, giving meds, and waiting. We went down on the diuretics from 3 times a day to twice a day because her "outs" were more than her "ins" , but we were not really losing any weight after that first initial pound. For several days we had been sitting at 12.8. Then Friday we went down to 12.6 and then to 12.5 last night. Today however her weight was back to 12.6. I know not a whole lot in the great sceem of things, but hey it was something. The size of her belly has also gone down by 1 cm and that has stayed the same the last 3 days. Yea! They will be taking her for her heart cath between 7 and 8:30 am today/tomorrow. Hopefully we will get some answeres and it will be something easy to fix, but untill then we wait.
        So now on to what have we been doing to keep ourselves busy over the last several days. Well we have gone on several long walks. I wish I had one of those things to keep track of how far you have walked because we have probably walked several miles per day. We have also been making some new friends. At the begining of the week there were about 4 or 5 hypoplastic heart kids here all todlers. Now there are 3 or 4  and Kylie is the only one with out a chest tube. It is almost funny to watch all of these kids play together in the play room because they don't care about their tubes so they are just running around and the parents are left to try to keep the tubes from becoming tangled with someone elses let alone any thing else they can get caught on, it's like a giant game of twister and tag all rolled in to one. Also we have met a family here whose son is 16 years old and has hypoplastic left heart syndrome (Kylie's heart condition). He is here because he was having problems with his aorta and needed a surgery to fix the problem, but he is 16! I know there are people out there who are older than that with this condition, but it is so nice to see and meet one in person. I was so excitied I had to get Kylie's picture with him. We hope to get a picture of all the little hypoplasts with him before we all go home. It has been so nice to get to talk with him and his family and learn from their history. Also because he is older and just went through a surgery and currently has a chest tube, we are able to get more of an insight into what our little ones are feeling with all this because he can tell us. It has been such a learning experience.  Thankfully, they have been very open and sharing, it is easy at times like this to be closed in and private. 
    On Saturday some, of the U of M football players came to visit the kids in the hospital, you should all be proud of me, I am refraining on making joke on the U of M team....but it is really difficult not to. I know they were some important people because each group of players required a security person with them and when we went down stairs there were 4 security gaurds at the elevator instead of the normal 1, but honestly I didn't know who any of the ones in our group were. They brought the kids teddy bears. Kylie enjoyed them because one of them rolled a ball back and forth with her for a while, my daughter has simple pleasures ( I really hope they get a bit more complicated as she gets older.  I don't want her dating just any dork who can roll a ball).
    A few therapy dogs have also made there rounds so Kylie has enjoyed playing with them.  It is fun to watch her face light up and the smile she gets when she sees them.  She walks over and shows them gentle (showing them gentle is what we tell her when we want her to pet something) and gives them a hug.
    Sunday we got to escape for a little while.  We took a small excuvation axe that we hid in a Bible and slowly dug a hole in the wall, that we hid by covering it with a poster.....just kidding (points to who ever knows what I am talking about here)  Seriously, since our antibotics finished on Friday and we had nothing going on till Monday, they gace us a pass to run away for a while.  We got to go home and go to church.  It was awesome being able to get out for a while.  Made it kind of hard to come back though.  We had to though, no jumping parole and leaving to some tropical island to work on a boat :-D.
     Today, Monday, we are waiting for the doctors to come in and get us set up for a heart cath. We can finally get it done.  For the last week we have been treating the symptoms with out treating the cause.  They are hoping that it is something easily fixable, well duh me too.  They think it something that we can control with medication.  They have a few forerunners, but her symptoms don't fit completely into any one of those.  So we shall see.  When we know more..so do you .  :-)
   

Update and Encouragement, I hope

1/2 OF AN ANGELS HEART
It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks, "Will I be okay with only half of my heart?" Jesus replies, "Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart." "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves." -Author Unknown

-This was a poem that we found when Kylie was first diagnosed and it was comfort to us. I know I have shared it before, but I would like to share it again. I still choke up a little near the end of the poem.
So today is pretty much the same as it was yesterday and the day before, giving her lasixs and antibiotics and waiting. They also draw her blood daily as well, to check and make sure her levels are normal and that she isn't fighting an infection. Two of her's are a little high but the doctors assure us that they are elevating those with the lasixs, so we don't need to worry.
We are still trying to get some of the fluid off of her belly. We had that one big pound off when we first started but now it has been stagnant, with no real big loss. Granted there hasn't been any more in the way of gain either, so I think we will take what we can get :-).
We have a heart cath scheduled for Monday at 8:30 am. They are going to check the pressures in the heart and the function of the heart to see if that is what is causing all the excess fluid. They may also put in another fenestration if they deem it necessary. They are also talking about, since she is going to be sedated anyway, doing a Therapeutic fluid draw off of her belly. That is where they do what they did on Friday, take some fluid off the belly, but they work to get as much as they can off of her. So here we sit enjoying the company of the nurses and the other families.
If I could ask for a specific prayer for Kylie as well, I would like to ask for prayers for her fear of procedures. To say that Kylie has been through a lot is like saying the U of M football team is in need of practice, sorry guys I am an Ohio State fan :-). She has always been a little apprehensive around medical things, but latetly, even before the hospital stay, it has been full blown panic attacks. The moment she walks into an exam room she starts getting apprehensive and, a lot of times, when the doctors start to exam she screams and cries. When she sees needles, she starts screaming ALL DONE ALL DONE. Now I realize that this could be very normal for someone her age and what she has been through. I mean, I hate shots, and I haven't been through nearly as much she has but I hate seeing my daughter terrified and doctors and exams are going to be a part of her life. So, if you could pray for a spirit of comfort, peace and trusting for Kylie and one of wisdom for Aubrey and I, so that we best know how to help her through this we would appreciate it. Thank you.

I would also like to take a moment and offer a bit of encouragement to people if I could? What's that you say? I can, why thank you. This can be for everyone but I offer it specifically to parent's of special needs children. I am a Christian, I believe in a loving God who sent His Son to die for us and I believe that God knew what He was doing when He gave you your little one. I know that sometimes (or ALOT OF TIMES) it can feel over whelming and that everything is crashing in on top of you and that you are not equipped to handle all of this, I feel that ways at times. But I believe that when you look at the Bible, in the creation story, it shows God forming us with His own two hands and placing his mouth against ours and breathing His own life into us. This is very comforting to me because that tells me that the creator of all things knows me inside and out (not to mention my child, as well), knows my strengths and my weaknesses and if He feels that I can handle all of this, then that is saying something and I believe that holds true for all of us. Now that is not to say I don't get mad and am happy all the time, not at all. In fact, I think being mad can be very healthy, your little one is hurting, the child that you love more than anything is sick and hurting and you are at a lost to help. That is a very maddening place to be. I just encourage you to find constructive ways to deal with it. Be it exercise, journaling, talking, praying, beating the crud out of something soft :-), pillow, mattress, etc. (not the dog ;-), whatever, that is healthy, to deal with the stress and pressure. Also I encourage you to use that passion to learn and to become the best advocate for your little one as you can. Knowledge is power, my friends and the more I have learned, the more in awe of God and Kylie I am, and the less helpless I feel. For me, humor is stress reliever for me, as well. I try to find the funny in these things. like the fact that we have med students and I get to pick on them a little :-D. Finally, sometimes I think it comes down to a choice...there are days where I CHOOSE to be happy. I once had heard a minister say "You can't choose your day, but you can choose your attitude" and that has always stuck with me. Bad things are going to happen but how we choose to deal with them are up to us. Alright, I am stepping off my soap box, that was just something that I have been thinking about lately and I thought I would share. If it is helpful to you then AWESOME, if not, I hope and pray that you will find something that will help you get through this. Have a good day, if there is anything we can do, or pray for, let us know.

A,B,C,D and Kylie

    I liked scantron tests.  Do you all remember those tests in high school.  You get that gray computer sheet with all the bubbles.  You always had to make sure that you had a number 2 pencil, the bubble was completely filled in, and that you erased well enough so that the computer didn't accidentally mistake that erase for an answer.  Just what I need a little panic with my test anxiety, woohoo!  I liked the multiple choice aspect of it though.  I am a relatively smart individual, shhh don't tell anyone it would wreck my reputation but it is nice to see your possible answers and knew that some where in those four choices you had the right answer.  Though, I have to be honest, sometimes I chose an answer with the phrase "Well, I haven't had C in a while..."  Hey, don't judge me I got through high school and got me a good edumancation, I am very smert ;-).
     Kylie on the other hand, hates scantron, she doesn't like to be told how she is supposed to act.  She is the type of person that when given A, B, C, or D she would write in "E" and then circle that. Now you may ask how do I know this?  I mean Ron, you would say, she never has had to take a multiple choice test, how can you make such an assumption.  Well, I would reply, lets look at her life.  When she was two weeks old, the doctors gave her an hour left to live and had counted her out, well she is still here.  At two months old, she had a stroke that affected of a fourth of her brain, should have left her as a vegetable.  Well, now she is an active two year old.  Now I know it is God's hand working in my daughter's life.  But my daughter has always refused to be pigeoned holed in to anything.  There has been AT LEAST four different times where the doctors don't know how she did it, but she did it.  It's a running joke among our medical staff that Kylie will do what she wants and they will try and keep up.
    This stay is not any different.  They have ideas on what may be causing all of the fluid build up but they aren't sure.  We did a sedated ECHO on Monday, so they could get a better look at her heart, to see if her fenestration had closed.  Well, like we thought, it had.  Well, that would be the most likely reason why all the fluid is collecting.  The relief valve is no longer working, so the heart is working harder, which produces the fluid, which causes the problem.  There are two issues with this though, one is the fact that they are not sure how the fluid is making it into the abdomen.  It would make more sense for it to collect everywhere and not just in her belly..  It would be in the arms, face, legs, chest, and stomach.  It just doesn't fit.  Second, if the fenestration closed, the thought would be WHY did it close?  If it were being used, the blood would be pumping through the hole and that would have forced it open, and not given it the chance to close.  So they are not sure where the fluid is coming from and why the fluid is going where it is.  They have ideas but nothing fits, perfectly, into it.  The plan is to do a heart cath on Monday, to get a better look at the function of the heart, the pressures of the heart and to open the fenestration again, if needed.  We have to wait, until the antibiotic course has finished because, if there is E.Coli in the fluid in her abdomen, they don't want to introduce it  into the blood stream.  The antibiotics are done on Saturday and then give her two days, to make sure there is no infection and then we are on to the next step.  The earliest we will get out of here is middle of next week, but we are determined to find the answers.
     So the rest of this week, is going to be rather boring, I don't mind (o.k. maybe I mind alittle...I am really not a patient guy :-).  We will continue her diuretics and her antibiotics, and let her rest.  We want the bacteria and fluid out of her system.  It looks good so far, she is not sick and she has urinated over a pound of fluid.  So I am back at work and Kylie and Aubrey are staying up at U of M.  All I can say is there is a definite reason why I got married, I like having my family with me, but this is what is going to get my daughter healthy, so I will do it, sometimes complaining, but I will do it.  Please be praying for some friends of ours, first, our roommate who is where we were in January.  She is done with her third surgery and just waiting for the tubes to stop draining.  She sprouted a 104 fever last night, so they are watching her very closely.  Also, please be praying for some friends of our's little girl Katie.  She has a really bad urinary reflux that has gotten her quite sick.  She is on the mend but will need surgery in the future, which is always a stressful situation.  Thanks to all of you for your continued support.  You always remind us that we are not doing this by ourselves.

God's perfect timing

   So we have some answers and a rather big, potential, blessing.  The bacteria in the fluid came back as E. Coli.  E. Coli is a very common bacteria in the body, when it is found in the intestines.  This bacteria was found in the abdomen fluid, not where it was supposed to be.  There is two possibilities either, the fluid needle nicked the intestines during the procedure or she could have E.Coli in the fluid, all along.  This could have been really bad and could have made her seriously ill if we had not caught it, especially with her being a CHD child.  Since, she is not acting sick we caught it super early, if it was always there, before it could have caused any problems.  Kylie is receiving antibiotics to counteract the infection and it will keep us here for about a week.  The doctors have tested the sensitivity and are going to switch us to a more powerful antibiotic than what we are on now, but thank God they caught it.  Just another example that God is looking out for our little one.
    We need to figure out where the fluid is coming from and what we are going to do with it.  We had two main suspects, the liver and the heart.  The liver has been ruled out so that just leaves the heart and we may have some evidence implicating the suspect in the crime, and I didn't even get to play with my sunglasses, while shooting off quirky one liners, over songs played by THE WHO :-).  During our third surgery, the Fontane, the lungs were opened up to 100% blood flow, and that could put a lot of strain on to them.  So, as a kind of a pressure relief valve, the surgeons left a small hole, called a FENESTRATION in the heart.  If the pressure got to be too much some of the blood could escape out the hole and give the lungs a break.  It would leave Kylie's saturation a bit lower but it wouldn't over tax the heart.  Well oddly enough, over the last few months Kylie's oxygen saturation has been 96-100.  Also, given the fact that they can't find the fenestration on the ECHO, leads us to believe that it has closed.  We knew that it would, either, close on it own or we have to go in and shut ourselves.  By "WE" I mean our cardiologist, by way of a heart cath.  Interesting bit of trivia, we pushed out the fluid collection and analyzing because she wasn't acting sick and her saturation's were so good, but her saturation's were so good because, supposedly, the fenestration was closed, and the fenestration closing is, possibly, what is causing the fluid build up.  FUN STUFF eh?  The best I can come up with (and if you listen carefully, you will hear the sound of every cardiologist groaning because of how bad an example this is), is that the heart was like a person trying to exercise by lifting a weight that was too heavy for them and the fluid is all the sweat pouring off of him.  Not very scientific but it is the best I can come up with :-).
    So we have a plan of attack that has a couple of different points.  Point one, we have Kylie on two diuretics three times a day, to try and get some of the fluid off of her belly.  We are weighing her daily and measuring her belly and we have noticed that she has loss about a pound.  Point two, we are giving her the antibiotics to counteract the E.Coli and keep her from getting sick.  It is a course that has to be given over the course of a week, so we are here until, at least this Saturday.  Point three, we are scheduled to do a sedated echo today to get a better look at the heart and the fenestration  They did an echo last Saturday in the E.R., but Kylie had been through so much on Friday and Saturday that she was less then agreeable, she wasn't throwing a fit but she was tired of being poked and prodded.  So, they are going to give her something to help her relax and get a better look at the heart.  The only issue is that she isn't going for the echo until 2pm which is soon enough that she can't have any real food just clear fluids, but we didn't find this out until it was too late for her to be able to eat anything solid. This is going to be hard because she hasn't had anything solid to eat since dinner last night. Please pray 2pm comes quickly or at least the sedation.
    The other question is where do we go from here, if the fenestration is closed.  Do we go in during a heart cath and open it back up.  Two problems with that is, they can only do it after the antibiotics has run it course, because they do not want to introduce the E. Coli anywhere else and, secondly what if the fenestration closes again, where will be then.  The other option is to just put her on diuretics for a year or so and let the heart catch up and get stronger that way, it may be the less invasive, but we also have a history of kidney stones that were brought on by diuretics before, and those bring on problems of their own.  Though on the other hand, I guess the BIG question is....what happens if they do the sedated ECHO and the fenestration is still OPEN and they missed it.  Then we are back to square one on what is causing the fluid.  Either way we will know more today, I believe.
  

Blog

Just writing a quick house keeping blog.  I am trying to get in touch with some of the families we have met in our hospital experience.  If you have a blog that we can follow feel free to post in the comment section.  I am working on rebuilding the community atomosphere.  Thanks and God bless.

Be careful what you wish for,,,

   So here I sit, writing another update, just amazed at how the last 24 hours have been,  To let you know where we are, I feel, we need to let you know where we have been.  So sit back, relax and enjoy the journey that we are about to take, don't worry I am a fairly decent driver, pay no attention to what my wife says.
   I like to think of myself as a morning person.  I usually like to get up in the mornings, do my work out, and start my day before Aubrey or Kylie get up.  It is kind of mine own personal time.  Let me just tell you, this morning was shaping up to be a gorgeous day.  See there were three things that happened this day, that has not happened in quite a while.  First off, it was beautiful outside, the sun was shinning and it was looking to be a warm day and NO RAIN.  Second, I didn't have to work, they had called me Friday and gave me the Saturday off.  Third, I had no where I needed to be.  Now you may think that the last statement ties in with the second.  Oh no, my friend, they are different all together.  See, this was a Saturday with NOTHING going on, no work, no doctors, no therapies, nothing.  It was a family day and I had plenty of ideas of what we could do and barely any of them were at all productive.  :-).  So, I finished my work out and got ready....by getting back in bed, like I said, not productive at all.  But that was all about to change. 
      Change came by way of a phone call, from our friendly neighborhood G.I. doc.  No it wasn't snake eyes, it was Dr, Nadoff (bonus points to those who got that, because as I think more about it...that was a really lame joke.)   Dr, Nadoff takes care of anything stomach/digestive/abdomen related, so he was running point on the GOOD YEAR blimp my daughter calls a belly.  He had gotten a preliminary report back about the fluid they had taken off and it was swimming with what are called GRAM NEGATIVE RODS, which are bad bacteria.  Basically, my daughter had the warning signs of a nasty infection and he didn't want her at home, so he was sending us back to the hospital to be admitted, so much for the day off.  But remember I asked for this, I was not happy from before about just being sent home after the fluid draw on Friday.  There was just one problem though, and this was why they didn't keep us Friday, my daughter was not acting sick at all. Kylie had no fever, no cough, no nothing and all of our latest blood work-ups have come back clean.  Her white blood cell is normal, if there was an infection they would have been elevated.  So we have a little CHD girl with fluid coming from goodness knows where and has an infection that seems to have no symptoms.  Where is Dr, House when you need him (that joke is not so suttle)?
      So we load up the van, thank goodness we were still mostly packed from the day before and off we went back to the hospital and to the E.R. where we got to meet (drum roll please) DR. HOUSE!!  How cool was that!  I mean this Dr. House wasn't Hugh Laurie but still it was close, he was just missing the limp, the cane, vicodin addiction, and everything else...but besides from being nothing like him other than the name, they could have been twins.  Anyway Dr. House and his team (that makes me smile), spent the next 8 hours putting Kylie through every medical initial, I mean test, they have.  She got an ECHO, EKG, I.V., X-RAY, blood draw, and an ultrasound, trying to figure out what was going on.  The only issue is that everything is coming back really well, I am not complaining, but it is a tad bit confusing.  There is a possibility that the sample they took from Kylie was, accidentally, exposed to bacteria during the testing process and that is what is growing.  That could explain the infection, but not the fluid build up.  They still haven't found where that is coming from either.  The heart looks good as does the liver, those are the two main culprits. There is a small percentage of CHD babies who just release alot of fluid for no reason.  The cardiologists we have talked to have heard about it but haven't seen it before.  But small percentages seem to be my daughter's strong points.
    So we have a infection, that may not be, in fluid, that may not have a real discernible cause.  My daughter really has it in for me and my need for answers.  The plan, for now, is to treat the infection like the real deal until we find out otherwise, because if this is a real infection it could get into her blood stream, and that is no laughing matter.  We are admitted for a few days while they run tests and load her up with antibiotics, for the possible infection, and lasixs, to get the fluid off of her.  We are probably going to have a sedated ECHO in the morning, so they could have a better look at the heart, and maybe even a heart cath, among other things.    They aren't going to let Kylie go until they are sure everything is all right.  I won't complain about that one.  Thanks for you prayers and support...God bless you all.

P.S. you want to hear something selfish and self-centered ( sure you do)....The Stamm's went home today! I mean really, we went through all this work to get admitted so we could hang out and they go and get themselves sent home. UNGRATEFUL...just kidding!  Cayman had a MRI done and some tests performed and everything looks great, the shunt seems to be working wonderfully, so they discharged her!  There is no really clear answer to why Cayman had her episode.  Maybe a clot was in the shunt and it broke free, there is no way of telling.  That is a hard thing for me, because sometimes, there is no real clear answer.  We just need to trust that it is in God's capable hands and that He is in control.  He took the time to form each one of these babies with His own hands and breathe life into them with His own mouth.  He knows what they can take and what they need.  Maybe we can take some comfort in that, that someone more powerful than us is in control of the big picture, someone who loves us very much.  If you are having trouble with remembering that at times, don't worry, I do too.  Good night all and God Bless, we are in good hands.

Kylie with.....Kylie!

So today was the day we got to go to U of M for answers. I like answers, answers mean information and information means a plan. I can handle almost any situation as long as I have information and something to think on, so I can make a decision. I was hoping to get some of that information today at the hospital. I knew it wasn't going to be all the information, I didn't even know if they were going to keep us or not. I just thought I would have something. Well we got something all right...
Let me back up and start from the beginning of today. We arrived at the hospital, each with a change of clothes and toiletries, just in case. We had a habit of carrying, what we affectionately called "OH CRAP" bags in our cars, when Kylie was first born. They were bags that had a change of clothes and a few things that we would need if we needed to go to the hospital at a moments notice. As things have calmed down, we got out of the habit of carrying them. Well, with all the fun that we have had, sarcastic tone, and with all the uncertainty of what was going on, we started caring them again. So we were ready, just in case. Also, with us, it seems like life has a sense of humor and we knew that if we had them...we wouldn't need them, but if we didn't, we would :-). Well, we get there and are escorted to an ultrasound to see where the best place to get a sample of fluid and then we get to speak to a doctor about what is going to happen, right then and there and afterwards. The plan is, if it is Kylis drainage, the fatty fluid from the lymph vessels, they would keep her and see about getting the most out of her and then we would take it from there. If it weren't, they would take what they could and send it off for testing and we would know in 3-5 days. Kylis was the forerunner, we have had it before and, granted I know this isn't a diagnostic test, it would be one of the easiest to fix. Also it would be one of the most recognizable. Kylis has the look and consistancy of skim milk, so if they pulled white fluid off of her, we had it nailed. So the docs took her and Aubrey and I had to wait. I am not a big fan of waiting, I HATE waiting. I am the guy you see in front of microvawe tapping my fingers impatiently. Sorry, I am working on it...I have been thinking about watching paint dry, to help train myself...but I am not patient enough to stand in lines to buy it :-). Anyways, the doctor come back after about an hour and a half and I see that he was a plastic bag with a speciman jar in it, it's Kylie fluid. Well, I am like SHOW ME WHITE AND MILKY and was it? Was it the Kylis drainage, the seemingly most obvious choice that it could be? Come on, have you met my daughter ( you should, she's adorable!)? She never does anything the way she is supposed to. The liquid is the color of apple juice not a white speck in there. So now we know two things...1) it's not Kylis drainage and 2) we have to wait to get the answers (refer back to preivous comment on waiting). So I am getting info, just not the kind I want and none of it was helpful right now. You see we really have no idea what this could be. Until that fluid comes back we are flying blind. It could be anything from malnutrition (which I doubt, if you have seen my daughter eat you would know why) to liver failure and cancer. Her blood work up looks good, so that is a blessing. Oh and another cherry on this fun little sundae like I call my daughter's medical condition, there is no guarantee that the fluid will come back with ANYTHING at all. If that is the case our next steps would be liver biopsy and exploratory surgery. So we were sent home having to wait for the culture to grow and the tests to be performed. We can have perliminaries as early as tommrow, but nothing real concrete till, at least, the middle of next week.
The trip had some real fun moments as well. Kylie got to see the poster of herself. It was really kind of neat to watch her look at herself. The only issue we ran into was when Kylie noticed the crown that Kylie was wearing (is that confusing to anyone else :-)) and then was asking to wear it herself. That took a little explaining :-). The Stamm's...Kristen, Mike, and Cayman

We also got to see some friends that we hadn't seen in a while, the Stamm's. We met them, when Kylie was first born and we were new to U of M and the special needs child family. They were kind enough to come up and visit with us and get us acquainted to everything. They were a blessing to us. Well, Cayman had been having some issues and they had a really intense couple of days and they are up in the hospital making sure Cayman is alright. Please pray for them, they were a God send to us.
I have been dwelling on something these last few days. I have been dwelling on the ownership of Kylie. Ever since she was born I have seen her as my daughter, which she is, but I have been coming to the realization that I really don't own her. The idea of her being first and foremost God's daughter and that He has entrusted her to me has been permeating my thoughts. It seems to change the way I look at her, changes our relationship. Like I am preparing her to live a Godly life. I am her earthly father but God being her heavenly father is so better equipped to handle her and when I focus on that it gives me a bit more peace than what I usually have. Like, I know she is in good hands. Not sure where all this is going, but something I felt that I should share. Love to you all.

Also...someone give me a reality check, sometimes I get the feeling that I may be complaing in these. I don't want to come across as whinning or complaining. I want these to be fun and informative. We do need your prayers and I want to be honest but I want the tone of the blog to be one of goodness. Feel free to be honest with me :-).

We are fine....a friend isn't though

Kylie is fine, nothing new has happened and we are still planning on the tap tomorrow. A friend of ours isn't though. Please be praying for Cayman Stamm, daughter of Mike and Kristen. We have met them through U of M. Their daughter has a shunt that drains fluid off of the brain and the shunt is failing. She was taking by ambulance from their home today. Please pray for the safety and health of Cayman and thay the Lord's arms are around the whole family. Thank you for the support you are to us.

Couldn't decide what to call this one....

I have a few titles that are running through my head for this update. One is "My daughter is the new face of U of M hospital...well at least the back of her head is the new face of U of M hospital." But that one was kind of long and didn't really have a decent ring to it. A second one was actually from a conversation that my wife had about my blog in bible study yesterday. It would be entitled "Well, he used to be really good about it but he has kind of dropped the ball lately", but that one paints me in a bad light and we certainly couldn't have that one. Thirdly, and I think it would have been the forerunner..."Kylie the OOMPA LOOMPA!!!". I liked it but wasn't sure how you all would feel about it. Technically, though this is my blog, so I can write whatever I want to sooooo.....:-P. But why don't I run through my thought process on these titles. Lets take the mean one first :-).
To say I get distracted is like saying fans of the Detroit Tigers are definitely not fair weather fans. That is most assuredly an understatement. I could be completely content in an empty room because I could live in my own little world for hours...its all right they all know me in my own little world. So I had ever intention of writing new blogs on my days off, but I kept on getting distracted and it wouldn't be until I was in bed and drifting off to sleep before I had a big old mental slap of the brain and was like CRUD I DIDN'T WRITE THE UPDATE....I AM SO FIRED....and then I make a promise to write it tomorrow, but then it happens again. So when someone, I am not naming names....cough Chelsea cough...made the critical comment of how I used to be really good at the blogs but now...not so much. ;-). I couldn't really be surprised at it but, I can still make fun of her for it. Oh well it is always easier to destroy than it is to create :-D. Though she is not completely off the mark, I have been bad at keeping up with this and I will do my best to keep on a better schedule, with writing one regular update a week and if there are any surprises I will let you all know. Now on to the next title.
My daughter was in the hospital for her surgery not too long ago and I must say she caused quite a stir. See, I am going to let you in on a little secret here...MY DAUGHTER IS CUTE. Hey, it's not bias if it is true. There is just something about sick children that makes them cuter, too :-). Well, we also had a friend of ours bring in a princess outfit in, crown and skirt, for Kylie and she fell in love with it and wanted to wear it all over the place. So my daughter was walking around with a crown and pulling her case of chest tubes all over the hospital greeting every one. Well some one got a picture and this will be one of the new banners greeting everyone in the main hospital...
Kylie was not quite feeling the motivation so she didn't want to look at the camera, but still...the back of her head is incredibly cute. But next time you are at U of M, see if you can find it.
Now on to the OOMPA LOOMPA title . Well sometimes a picture says so much more than me trying to describe it. So take a look :
OOMPA LOOMPA

Kylie

As you can see these pics are nearly identical, so close in fact, I thought it prudent to put the names of the two so as they were not confused. Her belly is getting very distended, aka BIG. This picture was taken about 3 weeks ago and it has grown about 2 or so inches bigger since then. We were scheduled to head to Ann Arbor on the 18th of this month to get the fluid tapped and tested. Just to let you know I am not a patient man, and the thought of having to wait that long before we had some idea of what was going on, was killing me and I was not always the easiest to be around...my wife is a saint for putting up with me. The only problem was that other than the ever growing belly...she was stable. Her vitals are the strongest they have ever been and her heart is doing great, for her. So she was urgent, just not emergent. Well as of yesterday, we got bumped up to Friday of this week. Why the sudden change, because they have noticed the fluid has started to get into the chest cavity as well. Hey chest is getting tight and not as easily compressible. That is a worry because that can put alot of unneeded stress on an already taxed heart and lungs. We are hoping that it is nothing too serious but there is no way of telling until we test the fluid, so hopefully we will know soon. You think after everything we have been through, I would be used to waiting. HA!!. Thanks for your prayers and continued support.