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.