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.

update

I dislike colds!! BLEEHHH!!!



My baby looks like she is having a baby!




So we talked to the GI doctor yesterday evening. After talking to a few other doctors including Kylie's cardiologist, they believe that the most likely source of the fluid in Kylie's belly is chylous sp drainage ( fat draining from the lymph nodes ). This is a complication we had with Kylie's first surgery, but it happened A LOT sooner post op and was in her chest not her belly. So if that is what is going on we have to figure out why this is happening so long after surgery and how it is getting all the way down to her belly. Don't get me wrong, it is a good thing that it is going to her belly. This could be a lot worse if this were sitting in her chest like the first time, she would be having a hard time breathing. I just don't know how it is ending up in her belly. Anyway the plan at this point is to drain the fluid off her belly and send that for testing to see if it is the chylous drainage or if is something else. If that doesn't give us any answers we may still have to do the liver biopsy, but we are hoping to avoid that. So U of M will call us on Monday and set up an appointment time to do this. My daughter doesn't know the meaning of the word ORDINARY! And to top it off she is fighting a small cold as well. Can anyone saw insult to injury.

No News is Usually Good News

I know that it has been a while since I have written and I am sorry for that. Procrastination is a big problem of mine ( I will solve it tommrow :-)), I always mean to write in this but I never think about it until I am in a place where I can't do it. Rest assured though nothing big was really happening, well from a medical standpoint. She is talking more and she is asking for things, in fact one morning she woke up and asked for her medicine. She is starting to voclaize what she wants more and more, which is awesome. It is so cool to be able to hear her little voice, though she is two, so sometimes that little voice turns into a big whine...that isn't so cute. She has started the temper tantrums, not real bad (no throwing herself on the floor), more just screaming and waving her arms around like a bird trying to fly. I am thinking about trying that at work and seeing if that gets me anywhere...maybe ask for a raise, and while they think about it start screaming, crying and flapping my arms. Hmmm, that may work.
The reason why I am writing, though, is to let you know of something that has been going on for a little while. See, my daughter is getting bigger in alot of different ways. She is getting bigger in height, in weight, in vocabulary, in development, and in STOMACH. My daughter has a gut on her, that rivales mine, o.k. slight exaggeration there...her's may be a bit bigger. All kidding aside her stomach is getting bigger and has been for the last month or so. At first, we thought it was a good thing, she is gaining wieght WOOOHOO!!. Then we thought mybe it wasn't so good, she is gaining too much weight. Finally, we weren't sure what was going on, we just knew that my daughter was turning into a oompa lompa, and we couldn't explain it. Today we had an appointment with her Gastrointestinal Doctor, fancy medical term, for Stomach doc, and he took a look at the belly and sent her off for a STAT ultrasound and blood work up. For those you who don't watch GREY'S ANATOMY or ER, STAT means NOW! The blood work up showed that some of her liver enzymes were off, but not enough to be a blaring red alert. Her ultrasound showed that a lot of fluid has gathered around my daughter's liver and that the fluid was causing her daughter's abdomen to swell. So my daughter has gone from an oomp-loompa, to a water ballon, GREAT, I no longer have a child I have a picnic toy. ( sorry that one may have been a bit over the line). So the next stop was to get Dr. Suarez involved, he is our cardiologist, Kylie's heart doctor. He wants an ECHO of the heart, once again for you none medical drama watchers, an ECHO is a video of the heart as it is working. The thought is that something is putting stress on the liver so that it is malfunctioning, and oozing fluid, and Kylie's heart is the main suspect. The only problem is that the heart is looking great, well, for Kylie anyway. It seems to be working fine. So we have a liver having issues, labs that indicate that something is wrong, but not with a strong enough indication of what, and the main suspect has just been cleared. So now we have no clear idea of what is going on. We just know something is wrong. My daughter never does ANYTHING easy. I am considering putting her in time out until she starts copperating.
So our next step is to either pull some fluid out of Kylie and test it or do a liver biopsy and send that off to be tested. We are still deciding on which one to do. Testing the fluid would be a bit less invasive, but it also has a higher chance of being inconclusive and we could just be wasting our time while waiting for the inconclusive test results to come back, while my daughter stlll collects fluid. The liver biopsy is more invasive and has higher risk of bleeding but it is more likely to produce results. So we are going to call the doctor in the morning and see what we can do. From what I understand, this could go either way, either this could be something very simple, like irritation left over from surgery, or it could be REALLY bad....so I am asking for you to pray for us, as I know you are. God has brought Kylie through so much and alot of thanks is owed to you for the prayers that have been given up on her behalf, even when I forget to write. Well good night all I am off to bed, I couldn't sleep until I got this off my chest, sleep well.