These are some pictures of Karsyn and Koen in the first snow. Kars didn't last long out there but I couldn't get Koen to come in. He just loved it! Its amazing that 3 weeks later he would be able to play in the snow. Today is 4 weeks since the surgery and he is about back to normal in some ways better. Friday we went back to the cardiologist and they were really pleased with him so they pretty much turned him loose beside tackle football :) When we got there its a really long walk to the office and it used to be that he would make it to the front doors and then I would have to carry him the rest of the way but Friday he got out of the car and ran the whole way and wasn't even puffing:)

Good news

We got some good news today! Chest x ray looked great and we took the bandage of of the chest tube hole and it looks good too. He said tonight when we was eating that he don't have any band aids, ports or bandages anywhere. That's a great feeling!! We are done at Dr offices until Friday to check his coumadin level, I just wish we could get that leveled out now and then maybe we would be over the hump. I have heard people say how hard that was to get regulated and now I understand. One day its up the next its down but I'm sure we will get there. He needs to be on it for about a year and than he can go back to aspirin. He cant swallow pills and it don't come in liquid form so I have to crush it up and put it in something. He thinks its just awful which I'm sure it is but he don't swallow it somehow he can take a drink and keep all the pink crumbs in his mouth, by than he is just having a fit how bad it is finally after about ten minutes he can get it down. If anybody knows how to teach a 4 yr old to swallow a pill please contact me:) THANKS TO EVERYONE THAT HELPED ON SATURDAY WE REALLY APPRECIATED IT!!!! SPECIAL THANKS TO CALVIN AND KAREN AND THE REST OF OUR FAMILY!

DR. Arensman and Karsyn

Trying to steal his bacon

Its Sunday morning and we are getting ready to go home!!!! We ARE SUPER EXCITED:) We need to come back on Tuesday to do blood work and another x ray but we wont think about that now we just get to go home today and that's all that matters right now. I have some good pictures of Kars and is cardiologist that I was trying to get on but cant get this computer to work so I will have to do it when we get home. Everyone that has heard us talk about Dr. Arensman will get to see how funny he is:) Kars loves him. He always listens for his heart in his feet than his knees and then acts like he cant hear it Kars just thinks that is so funny. Oh by the way his x ray not much better but at this point it will not get any worse so just keep praying that by Tuesday it will be gone.

Disappointing day

In case you you haven't heard we are back in the hospital. We came down yesterday to take his drain out of his chest and things did not go as we had planned. When they pulled it out they saw that the stitch was a little infected so they just put a pressure bandage on and when he sit up he was crying and coughing of course and the tape came lose on the bottom and he sucked air into his chest cavity and collapsed part of his left lung. It never really affected him that we could tell but it can be dangerous guess, so they admitted us and was just watching him over night. The docs said if it didn't get better by this morning they would put a small tube in his side to try to drain the air out but thankfully it improved so at this point we just have to sit and wait until they think it is safe for him to go home. He does another x ray in the morning so just pray that is clear. We were really really disappointed but could it could be worse.

Happy Thanksgiving! Happy Birthday Nate!
We are home and it has been crazy ever since we have been here but we are doing good. It is a full time job taking care of Kars with all his meds and taking care of the drainage tube but the output is getting less and less so maybe we can get it out sometime soon. Yesterday afternoon I was trying to help Kars move from the couch to the recliner and Koen started whining (he thinks he needs moms full time attention too) Kars just looks at him and said "oh Ko would you be quite you don't have half as much wrong with you as I do" :):) I laughed so hard it was so cute. Kars is pretty demanding he thinks when he says something we should all jump. We have to take him back to Louisville tomorrow for a blood test so that will be a big day again. Joanna and Mom came to help me yesterday and last night Calvin & Karen brought supper up and Grandma & Grandpa Wittmer are bringing lunch and Kristen is bringing supper, Friday night Ang & Jay are bringing something. Do I have it made or what? I will try to get some pictures on some time today.

COMING HOME

WE ARE COMING HOME TODAY!!!!! The docs were in and thought everything looked great. We are packing everything up and getting ready to head out I would say he will be wore out until we get home. I will update later if I have time.

Monday night

What a day! We tried to get Kars to walk some distance today and he thought it was bad I'm sure it was not pleasant. We get to com home in the morning if his x ray and blood work turn out good, I hope we can I haven't been outside since last Tuesday but I also want to make sure he is ready. He has a long way to go but he has come a long way in a week too. He will come home with a drainage tube in is chest and I think once he can get that out he will be a different boy, I watched when they took the other tube out and I couldn't believe how much was up in there so its no wonder that he walks all bent over. He also will be on coumadin (blood thinner) and we will have to go get a blood test every other day until they can get it regulated. (sounds fun) He is sleeping right now that's one thing that is against the law is to sleep in the hospital every half hour I have to chase someone off :) :) I don't think I ever said yet how pink his toes and fingers are even his ears look different, we was used to seeing them as purple as as grape, even through it is very hard to watch what he is going through it makes us feel so happy when we see how pink he is now. Better try to get some rest now I'm sure it wont be long until someone else comes to do something. (I was proud of Nate today he even sent some on their way) :)

oxygen level at 96%

WOW 97%

marking off days until we go to disney world

working on a puzzle

Sunday night

I think we had a very good day so far I'm almost scared to say that cause its seems like every time we think we are getting over the hump something else comes up but it has only been 5 days since the operation and that's not very long if you stop and think what all he has been through.

Its seems a lot longer than that to us. If you haven't read the poem on this blog go back and read it, you can tell that lady has been there. When I read that it was like it was me talking and I'm sure there is a lot of other parents can identify with it too. As I'm typing Kars just said " you know what mom I would love to go tomorrow" that sure would be nice but I'm afraid we have some more bridges to cross but he has come a long way today so maybe we can by Wednesday. Tyson was here in the afternoon and he really enjoyed that. Kaitlyn, Kendrick, Austyn and Andre' we will be looking for you tomorrow. As I'm typing he is sitting here just a talking and Ash I hope you read this cause he just asked what if you guys are done shelling when he gets home and I told him it don't matter cause if you are you will get the combine out anyway and take him for a ride. Thanks to all our family and our church family for all you have done for us PLEASE keep praying for us. One more thing Kars just took about 30 steps HOORAY!!

Oh what a day!! We did get moved out to the floor only to get moved right back to ICU. He started having really severe pain in his stomach and because of his heart they are not equipped to handle much. When we got back to ICU they think its just severe gas pains so I hope that is all it is. Docs was in this morning and think that everything looks good so here we move again.They said he HAS TO WALK today. Boy that will be fun! He don't want to put weight on his right leg But they think its just that they damaged a nerve with the central line that was in his groin. They told him its time to toughen up. He has been really tough I think I wonder how strong we would be if it was us. Dr Arensman told him the only way to be tough when your 70 is to start being tough when you 4. Kars said " OK I think I can" Poor kid I just wish I could do it for him. PRAY for him today!!

Saturday morning

We had a great great night!!! We all slept like logs including Kars, its just unbelievable the change he has made in 24 hrs. His sats have been 95 over night with NO oxygen. Never thought we would ever see that high of a number. I'm so excited!!!!! The Docs have not been by yet so maybe I can give you all a report later. We are hoping we can get a lot of lines pulled today so it will probably be a busy day. One more thing KOEN IS COMING TODAY:) :)

friday pictures

Watching Bearestein Bears with dad who looks a little sleepy.

Opening up some of of his presents,up until today he wasn't interested in them.

Starting to eat again. He had quite a variety today starting out with oatmeal and brown sugar (his favorite breakfast) hashbrown and scrambled eggs from Mcdonalds ,pizza and chicken nuggets for lunch, fish sticks and macoroni and cheese with a milkshake for dinner, more chicken nuggets for bedtime snack, although he didn't each much more than a couple of bites we are ready to celebrate.

I think we maybe starting something because when he asks for something he expects it right away,

This is a few pictures I took today. He is doing a lot better today PRAISE THE LORD!!! He woke up one time today and looked at me and said "mom what are we going to do today"
I think mom and dad 's stress level went down quite bit today.

Friday morning

We made it through another night!! It was really rough his lungs are really full and he coughed and coughed and that causes lots of pain. I really cant imagine how bad that hurts. The Docs was all here already and they think everything looks great, Dr. Arensman done a echo and was really pleased with that, no leakage on anything that they done on Tues so that's good news. We are gonna try to get him out of bed today and start taking some meds by mouth, If we can do that maybe we can get moved out of ICU tomorrow. I hope that he can make a big turn around today. Poor kid doesn't even talk anymore I think he is shutting everything out and he is sooo sore and he thinks everybody is out to get him. Just keep praying for him today that he could have a good day and for us also we feel so helpless as his parents.

Updated pics from today and Koen's first visit.

Karsyn resting after a morning of Lightning Mcqueen and doctor's visits!!!

Koen was not too sure about this at first!!!!

He looks like he is ok with it now!!!!!

Thursday morning

Its me again....... Kars is doing ok this morning, he gave us a scare last night Nate was out trying to get some sleep and I was trying to help him cough he laid back down and all kinds of beepers started going off and people came from everywhere his heart rate spiked to 290 and his blood pressure was up and down. In no time the room was full of machines and people scared the wits out of me. He just kind of grunted every once in a while but he had his eyes open and would answer questions by shaking his head. They done a EKG and X ray and disconnected his pacemaker. What they determined was that he had a problem with rhythm in the OR and they had but him on a med for that and a pacemaker and that corrected the problem. He was doing fine with the pacer so yesterday morning they stopped the med for the rhythm problem and I guess he still needed it, as soon as they restarted it he leveled out fast but one good thing from this they didn't need to put him back on the pacer. What started this whole rhythm thing is that during surgery they put a shunt thing up through the center of his heart to his pulmonary arteries and this is rubbing on the electrical part and it just takes time for the heart to get used to this.
The Docs just made rounds and they thought everything looked good and they said that maybe tomorrow he can move to the floor. That would be wonderful its so noisy in the ICU. We was able to get a little sleep after this whole episode so maybe today will be a better day. I think I'm gonna need some nerve meds soon if he does that to me again. I told him that moms hair are turning gray real real fast and he just smiled. I will try to get some up to date pictures on today some time. Keep praying that he would be able to keep some foods down today.

new update

This is Karen again...just wanted to let everyone know that Karsyn is stabilized at this time. He gave everyone a scare a few hours ago. His heart went out of rhythm and was beating twice as fast as it should have and his SAT'S were way down. They have figured out the problem and he seems to be doing fine right now. Just continue to pray!
KAREN

Just a quick update on Kars, he is doing OK we just tried to clean him up and that really wore him out and was in pain so we gave him little more pain medicine now he is sleeping. Over all he is doing well or that's what they tell us. Koen came down for the first time today he just didn't like the hospital much. Its was so sweet one time the nurse got out a syringe and he thought she was going to give Kars a shot and he just lost it he cried and cried and all she was going to do was draw blood. He was looking out for big brother. I don't have time to ever write much this is a full time job trying to keep him satisfied. Thank you to everybody that has been praying for us and please continue to do so.

These are pics from yesterday that I didn't have time to post. He is doing ok. No vent today. He is uncomfortable, but he is easy to work with. He does everything that we ask him to. Kars likes his sprite-He has been drinkin a lot of it. The doctors came in this morning and they removed a few of his IV lines (spaghetti as the nurse calls it). I will post some pictures from today later.

update

Hey everyone this Karen! I am updating for Lisa. Karsyn got out of surgery about 1:30 pm and Lisa & Nate got to go in and see him around 4:30 pm. The Dr's. said everything went as expected and the accomplished what they set out to do! Prayers have definitely been answered but it is still going to be a long journey. We left the hospital around 5:30 pm and he was kind of starting to struggle, moving his arms and legs and gagging on the breathing tube!:( They had gave him more pain med right before we left and I think he kind of settled down again. Nate texted on our way home and said that Lisa asked if he still loved them and he responded by nodding his head! (This morning he begged them not to make go to surgery!;( that just breaks my heart, I can't imagine how Nate & Lisa must have felt!;() Lisa just texted about a half hour ago and said that they have the vent shut off right now and he is breathing on his own but they want to let the breathing tube in for at least another hour to see how he does. She said he has been struggling and gagging trying to get the tube out!;( As I am typing, Lis just texted and said they removed the breathing tube and he is much more happy! His SAT'S are at 95 without any help from the machines, before surgery they ran in the mid 80's! PRAISE THE LORD!!!:) God is still answering prayers!! Please continue to pray! I know tonight and the next couple of days are still going to be very long and tense for Nate & Lisa! They amaze me with their strength, I don't know if I could have went through all that have been through and have stayed as strong as they have! Karsyn is also a little fighter. He is amazingly brave and doesn't give up!! He has a special place in my heart! Thanks for all the prayers and please continue to keep praying that Karsyn's little body would continue to heal! God is faithful!!:) OK, I hope you have been able to make sense of my ramblings!!:) Lisa will update when she has time, I know that she has pics that she wants to post! God Bless!
KAREN

Its surgery day and they took him at 7 30. He was pretty relaxed right then they gave him some goofy juice and that really helped. I like to think I am tough but that was by far the hardest thing I've had to do. He was very upset last night he wouldn't go to sleep he just kept saying "if we promise take him home he will go to sleep. When he did go to sleep he slept really well. The surgery will probably last until noon or 1. KEEP PRAYING!

Karsyn and farming

Daddy took Koen shopping and this is his new farming

set. My kids are just born farmers and we don't have any

animals close
showing Brownie

He thinks its just great how they mud around

He would ride all day if Mom would let him.
Waiting to take off in the auger wagon.
This is his favorite picture so we had to put this on.
Thank You Ashley, Bryant, Logan for letting him ride all fall.
You guys are his hero's

"When Time Stands Still"

I came across this poem last night on the Internet. I enjoy reading things that other Moms write that have a child with congenital heart defect so I thought I would add it to my blog.

"When Time Stands Still"
It starts with news impossible to hear
It conjures up your every fear
It's when they say your child is ill
That's when time stands still

In that moment , that suspended time
A thousand thoughts run through your mind
Will he ever laugh and play?
Will I see his wedding day?

All the planning, the hopes and dreams
Are put on hold- just what does this mean?
His crib is empty,his toys alone
For now, the hospital will be his home

This is a place where time stands still
Where the void's too large to ever fill
For in a hospital's intensive care
Children lie,some unconscious, some aware

And time is measured by a new yardstick
Every second marked by a monitor's tick
Noting every breath the child takes
And every beat his tired heart makes

Just a moment of watching a child writhe or strain
In sedated confusion, or fear or pain
Or pleading for a drink to which you can't oblige
Seems like far more than an entire lifetime

And the children who live far too long
In hospital gowns, trying to be strong
They have old souls, that's what they say
Because in each moment they've lived a thousand days

For those who say time goes by too fast
Sit with an ill child, and see just how slowly time can pass

Surgery rescheduled

I'm actually posting! Can you believe it? I was having trouble with my blog but I think I have it figured out. A lot has changed since my first post, Karsyn's surgery has been changed until the 17th of November. His surgeon Dr. Austin herniated a disk in his back and was unable to do any operations. It was really disappointing that we had to change all the plans, we know we have to do it sometime so I'm ready to get it over with. If we could keep putting it off and it would just go away that's what I would do. We leave Monday morning and have a very full day with appointments starting at 9:00 A.M. The surgery is set for Tuesday morning at 7:30. Please keep praying for us!

The purpose for this blog is to try to keep friends and family updated on Karsyn. Most everyone knows his life story but for the ones that don't here it is: he was born on April 2 2005 and thats when we realized he had a serious heart defect. He was taken to Kosair Childrens Hospital in Lousiville. His condition is called Dextracaridia ( heart is on the opposite side of is chest ) and Transposition of the Great Vessels ( every artery leaving his heart is backwards.) He had his first open heart surgery when he was 4 days old and the 2nd when he was 6 months and now the 3rd and hopefully the final is set for oct 27. There would be no way to count all the Doctor visits, tests, xrays, heart caths, echos and etc. in between. I don't know where to start or end on his story I could go on and on but I'm sure you would get tired of it. We are so thankful for him don't know what we would do without him. If there is one thing that I have learned- BE THANKFUL for your health. We have a lot to be thankful for, you don't have to be at Kosiar long until you realize it could be so much worse.
Koen is 19 months old and a typical little boy in to everything. Just while I was working on this he got a loaf of bread out and tore it in little pieces on the living room floor. He is going to move in with Joanna & Rachel over the surgery. I told them they are supposed to have him potty trained when we get home. ha ha! That is going to be hard to leave him with somebody but he loves Joanna and loves to stay there so I'm sure he will be fine. She will probably have a lot more gray hair by the time this is over.
My goal is to update this everyday over our hospital stay so we will see if I can get that done. Keep praying for Karsyn and for us as parents.