HEART BEATS FOR CASTAN, A CHILD WITH HLHS | Medical Expenses - YouCaring.com
YouCaring.com - Free Online Fundraising
It's simple and 100% free!Create Your Fundraiser
Search fundraisers

HEART BEATS FOR CASTAN, A CHILD WITH HLHS

$17,088raised of $20,000 goal
85%

Organizer: SHELLY SCHISEL KAUTZA Beneficiary: Castan Schisel/ Ron and Marlena Schisel

Castan Schisel ,son of Ron and Marlena Schisel was born on May 21st 2013, with a heart condition known as HLHS. Please take a moment to read about Castan and his story!

This fundraiser is closed
Tap to expand
Fundraiser Details

My nephew Castan Schisel was born on May 21st 2013 at the Milwaukee Childrens Hospital with a heart condition known as Hypoplastic left heart syndrome. This rare disorder is the underdevelopment of the entire left side of the heart which results in blood not being pumped properly and needs to be treated with a 3 stage surgical process.

( Update as of July 19 th 2013) 
Castan has now been put on the Heart Transplant list , priority 1. He could get a heart tomorrow or a month from now, just hoping for a miracle that he becomes strong enough on his own! So please keep,this in mind as you read on. 

One week after Castan was born, which was a scheduled C-section,  he underwent the first procedure called the Norwood and is currently recovering from the initial surgery and hoping to be coming home soon! Unfortunetly it will be a short time home and he will have to make the journey back to Milwaukee for the next procedure which usually occurs at 3-6 months of age and the final at 18 months to 4 years . Even if successfully treated , children with this conditon have a high chance of health problems for the remainder of their lives..

Castan, as well as his parents, Ron and Marlena Schisel, and 3 older sisters, Mekenzie, Morgan and Maddie, have been close by his side helping him along each and every day, 3 hrs from their home in Antigo. Until he can be strong enough to come home they have been extremely focused on staying together as a family, they have been living at the Ronald Mcdonald House located directly accross the road from the hosptial. Being there a few times myself it is a live saver for families like theirs in need, they are extremely greatful for this but without Ron and Marlena being able dedicate time to the business they own together in downtown Antigo , they do not have the income they once had. I have seen first hand how their entire life has been completly turned upside down and even though we can not take away the stress and only image what they are having to endure, there are ways to help with donations to make this uncertain road a little easier for them to travel!

Please take time to look at the pictures of Castan, read up on his condition and do what you can to help him and family out!

Donations can be made directly on this website with debit or credit by clicking on the blue "Give Now" icon on the right side of the page

or 

  you can contact the Covantage Credit Union (Castan Schisel Benifit- Act#99911)
If you choose to call the bank directly please still make a note/comment on this page knowing , with your name or if you choose to remain anonymous, just so we can keep a tally of donations earned!

723 6th Avenue
Antigo , WI 54409
Phone : 715 627-4336

Thank you!
~Auntie Shelly

Contact the Organizer
Updates

Updates

12/15/2013
by SHELLY SCHISEL KAUTZA
Today I will extend our goal, many prayers needed... Feb 2014. X fingers.  
Share This Update!


11/22/2013
by SHELLY SCHISEL KAUTZA
What an awesome day at Antigo middle school! Shirts were made in honor of Castan and Mekenzie got to do a little speech:)   What a great little lady! Morgan was also there to support !  
Share This Update!


11/19/2013
by SHELLY SCHISEL KAUTZA
Well it's again been awhile since a new post, but that's due to no changes.. Well untill the past couple days!  Castan went I to have a procedure done to try and find yet again were the drainage was coming from that bad stalled him in being put back on top of the heart transplant list.  For some unexplained reason even though nothing was performed, Castan has been drastically improving and drainage is stopping.  We are hoping this is a good thing and it is I fact gone vs some sort of a blockage. Drs will look to hopefully take out tubes in the next day or so and continue to ween him of meds. This is just of course all to be taken with the possibility of false positives so please pray this is step ahead for him yo come home. The goal was September, since moved to Christmas.. with the slowing of his healing process I now say February 13 th will be a good day to bring him home! Please continue to pray for Castan who come This Thursday will be a half f a year old.. And never left the hospital .   
Share This Update!


11/19/2013
by SHELLY SCHISEL KAUTZA
Well it's again been awhile since a new post, but that's due to no changes.. Well untill the past couple days!  Castan went I to have a procedure done to try and find yet again were the drainage was coming from that bad stalled him in being put back on top of the heart transplant list.  For some unexplained reason even though nothing was performed, Castan has been drastically improving and drainage is stopping.  We are hoping this is a good thing and it is I fact gone vs some sort of a blockage. Drs will look to hopefully take out tubes in the next day or so and continue to ween him of meds. This is just of course all to be taken with the possibility of false positives so please pray this is step ahead for him yo come home. The goal was September, since moved to Christmas.. with the slowing of his healing process I now say February 13 th will be a good day to bring him home! Please continue to pray for Castan who come This Thursday will be a half f a year old.. And never left the hospital .   
Share This Update!


11/05/2013
by SHELLY SCHISEL KAUTZA

It has been a little while since I have updated but not much has changed. Castan is still awaiting to be transfered back onto the heart donor list by regaining his health.
It just seems to be a waiting game but we are all so happy he is fighting:)

Today Booster.com made the transfer of $280.00 to Castans account from the Mudding for Castan tshirt sales.. Thank you all so much!


Share This Update!


10/21/2013
by SHELLY SCHISEL KAUTZA
Catan did well during Thursdays procedure and drainage is down but not like the Doctors were hoping.. Let's pray it keeps going down. They did find were they were assuming the problems were but it will takes some time to know for sure .
Share This Update!


10/17/2013
by SHELLY SCHISEL KAUTZA
Today will be yet another surgery for Castan to try and locate and stop the drainage.

Around 7:30 he will be getting an MRI and hopefully the doctors will locate where the drainage, unfortunely options are running out and this needs to work!

This procedure is called a therasic duct ligation.

Lets hope the cause of this is found and fixed today!
Share This Update!


10/11/2013
by SHELLY SCHISEL KAUTZA
Well i have a new update that Castans mom would like to share-

WELL I WAS HOPING TO GET TO HOLD LIIL MAN TODAY BUT HE HAD A ROCKY NIGHT SO THAT WILL NOT BE HAPPENING TODAY:(
HIS TEMP AND HEART RATE WENT UP AND HIS STATS WENT DOWN.. WAS GIVEN SADATION BUT THAT DID NOT HELP SO THEY HAD TO VEX (PARALIZE) HIM AND COOL HIM CAUSE HIS TEMP WAS SO HIGH.
TODAY HAS BEEN GOING A LITTLE BETTER HE'S OFF THE COOLING PAD AND TEMPS BEEN STAYING LOWER HIS BP AND HEART RATE IS BACK TO NORMAL AND COLOR IS GREAT,ALTHOUGHHE IS STILL VEXED. THEY ARE RUNNING BLOOD TO SEE IF HE'S GOT AN INFECTION  AND ALSO DID SWABS TO SEE IF MAYBE HE'S GOT A VIRUS. SO THAT MEANS WE GET NEW OUTFITS! MORE FAMILY PICS TO COME AND STAY TUNED,
MARLENA
Share This Update!


10/11/2013
by SHELLY SCHISEL KAUTZA
Well I know it has been awhile since I have made a post but not much has changed.
Castan is slowly getting stronger but he still has a high amount of drainage that they are hoping gets better on its own before they have to do another surgery. His chest was closed a few days ago and he is going down on his meds. If the drainage can go away ( most important) he can be back on the road to being put back on the heart transplant list.
Share This Update!


09/20/2013
by SHELLY SCHISEL KAUTZA
Well it has been a pretty good, stable few days and all and all a better week. Castan is still heavily medicated but about 3/4 awake. Hoping for more good days ahead.  The last two weeks have been the most stressful yet remarkable, he is still with us today and we thank the drs, nurses , staff , god and everyone's prayers for this. He's come so far no turning back!  


Share This Update!


09/16/2013
by SHELLY SCHISEL KAUTZA
As I did not know, the surgery Castan had on Saturday was the the first one that Dr Mitchell had ever performed. He is truely a blessing to our family.
Castan had a stable day today, which is good, he needs to keep resting and the blood clots need to stay away! Will update soon!
Share This Update!


09/15/2013
by SHELLY SCHISEL KAUTZA
Castan under went surgery # 5 yesterday ha had some more reconstructive surgery as well as many more clots removed.. He is not on the ECMO machine as of now , but his condition is at such a fragile state that it can change by the minute.. Hoping for a better week.. Praying for better days ahead
Share This Update!


09/12/2013
by SHELLY SCHISEL KAUTZA
Even though there is a long and strenuous road ahead of him, Castan has made it out of surgery a winner!  There were reconstructions, clot removals etc...  He is off life support and now the hope is that he does not form any more clotresend he can get better, oxygen rich blood to get his lungs back up to speed, there is a lot I do not know and will not understand but he is with us tonite , come on Castan keep proving us wrong!!???
Share This Update!


09/11/2013
by SHELLY SCHISEL KAUTZA
After a long week, longest ever Castan will go into his 4th surgery since his birth . He has undergone two mayor necessary surgeries..  An emergency blood clot removal, collapsed lung and a horrifying stroke..  Tomorrow will be a true miracle , he was on life support for two days and after , for me a painstaking weekend, to make it through this will be amazing... love you sweet baby, you are my every thought, prayer , hope, emotion, anger , Toughness sorrowamend triumph. Fighter you Heard mommys voice today hear us all and continue u on,,,!!!
Share This Update!


09/06/2013
by SHELLY SCHISEL KAUTZA
Prayer to everyone from ron??????Going threw glen reverse surgerie tomorrow morning .. Clot broke off and almost took him from us  .. His lungs shut down and they brought him back .. Our Castan likes to make clots ... Doc Mitchell's is one hell of a man ... He had tears running down .. They are doing there best it all makes sence what they are doing guys .. This man has feelings for Castan , you have to be hear to see this .. And in away I'm glad you guys are not .. Castan had evidence of a stroke from the exrays and that will be addressed at a later time . The heparin is not a option any more ( its hard to explain) Whew that took along time and alot  of tears!! I know somebody is in that woods with him to help him out!! Everyone prayers??
Share This Update!


09/05/2013
by SHELLY SCHISEL KAUTZA
Well the echo results are not in, exams and chest X-Rays followed. dr will be talking tomorrow to figure out another plan, you fix morons  problem others begin!   It's been a hard day keeping him content and comfortable..  So many people are helping and praying! Please continue!
Share This Update!


09/05/2013
by SHELLY SCHISEL KAUTZA
Well today Castan was doing fairly well comfort wise. He seemed to have a good day with what he all has to deal with, including finally falling asleep and the dr's coming into do an echo to see if everything is flowing ok. Hoping now to get good results , will post later
Share This Update!


09/04/2013
by SHELLY SCHISEL KAUTZA
It's been another rough week, While trying to figure out medications to make him comfortable he also now has a collapsed lung, drs are retrying different routes of medications that seems to be a challenge, he has been very upset not to mention what his pain must be like.So many struggles with school beginning for the other children.. Thank you to all that continue to pray..
Share This Update!


09/01/2013
by SHELLY SCHISEL KAUTZA
Well it's been a few days since I last posted, but we have some positive progress. Castan had his breathing tube removean today and the blood flow to his lung is good and we are hoping he does not form anymore clots and he can get back on top,of the donor list for the new heart! We all want him home but most importantly at this point just day to day progress in getting stronger is what we hope for!!!
Share This Update!


08/29/2013
by SHELLY SCHISEL KAUTZA
IT HAS BEEN A HORRIBLE WEEK. LOTS OF MEDICINE CHANGES TO BLOOD CLOTS WHICH CAUSED AN EMERGENCY SURGERY LAST NIGHT, HE CAME OUT AND THE DR WAS PLEASED WITH HOW IT WENT BUT HE HAS BEEN REMOVED FROM PRIORITY ONE DUE TO HIS CONDITION.. HIS HEART IS SHOCKED AND BLOOD PRESSURE IS LOW AND IS EXPERIENCING IRREGULAR HEART BEATS.. ALSO THINKING THE CLOTS ARE REAPPEARING. UPDATES ARE HARD TO GIVE BECAUSE YOU DO NOT WANT TO RELIVE WHAT YOU READ AND READ OVER AND OVER AGAIN, HOPING AND PRAYING THAT THINGS START TO WORK OUT IN HIS FAVOR.
Share This Update!


08/26/2013
by SHELLY SCHISEL KAUTZA
It's hard to see the pictures of Castan and his continued struggle to get his meds figured out to keep him calm so he can rest. He was agitated and pulled out a tube yesterday as well as had a number of things done and some pic lines put in..hoping and praying for better days are ahead... I want to see him smile soon!
Share This Update!


08/24/2013
by SHELLY SCHISEL KAUTZA
Castans surgery went as good as planned! He came out with his chest closed(awesome). He was still intabated which they didn't know if he would be or not but just to give his heart a break and let it catch up with everything they left the breathing tubes in after surgery.The last two days he's been HEAVILY sadated on alot if meds and has been sleeping, but just today he woke up was ok and moving around. Alot of his adema went out of his face thank goodness so he started opening his eyes again! And the best news they took the breathing tube out this morning and he has a voice! Always scary. But for the most part we are on the right track! Soon enough he will be in our arms again!?
Share This Update!


08/21/2013
by SHELLY SCHISEL KAUTZA
Well we can breathe a little sign of releif, Castan is out of surgery and all went as planned. The Ecco before surgery showed that his heart was certainly not as strong as they expected yet this procedure is going to help in his hearts fuction so that he can endure the wait for the new heart, which is inevidable..
He is intubated and in recovery but should be back in his room by later this afternoon. This time his chest is closed to where last surgery it was not until a month after. Now it is a waiting game and hoping he is free of infections and further complications. A few days ago he was smiling and drinking from a bottle now he is back to healing, hoping he does not hurt... please heal him fast so he can be on the right, healthy road waiting for his new heart... way to go Castan!
Share This Update!


08/19/2013
by SHELLY SCHISEL KAUTZA
Well one day closer to the second surgery:/. I know you'll do great belittle man but hate to see you have to suffer more. Well yesterday you proved to us you are a stubborn Schisel, ripping out you feeding tube! Typical:). Id say you have to stop stressing your mom out but Marlena, that's never going to happen;).  Posted some new pics and hoping .... ;)
Share This Update!


08/17/2013
by SHELLY SCHISEL KAUTZA
Finally down to see Castan! Grandma Kathy , Uncle Donnie and Jason made the trip as well.I was so nice seeing him smile ! Hoping for a miracle ( new heart) we only have 3.5 days until he has to having his second surgery. So scarey to think he will be back on all the meds and tubes again:( Hoping it doesn't have to be as evasive and he can bounce back quickly. Will post new pictures soon!
Share This Update!


08/15/2013
by SHELLY SCHISEL KAUTZA
Today Castan had  visit from Cue The Light to do a video documentary of his story ! I'm very excited to see it and  so thankful they made the trip to do this! Something positive to look forward to!!!
Share This Update!


08/14/2013
by SHELLY SCHISEL KAUTZA
Well we found out today that Castan has one more week to go before his second surgery. The shunt in his heart from the first one is getting small and it is on to the second surgery, with is called the Glenn prodecure. I would rather hope to see an new heart in a week than another necessary yet stress on him. He is doing ok, he is a little sleepy from the procedure. Hoping for this heart very soon, like now! Stay strong little man!
Share This Update!


08/08/2013
by SHELLY SCHISEL KAUTZA
Castan has outgrown his baby table( as I like to call it) and now how a crib! He's enjoying all of his freedom to move around a little more comfortably:). There was a full page thank you in the brews paper today for all of our friends and family that have helped out as well as attended Castans benefit! He is so lucky to have so many people supporting and praying for him! 
Share This Update!


08/07/2013
by SHELLY SCHISEL KAUTZA
Update straight from the source! This is what mom had to say: So far everything has been pretty boring, nd like they say boring is good!! Lil mans has been taken off millrinon which is a kind of setitive that helps his heart not have to wprk so hard. He is still off his morphine and has adjusted to that ok?? today he had a echo and we had a meeting with doc  Heihre. The results showed Is heart is in heart failure and is 20% less then normal. This is between mild to moderate, but it just showed that we made the correct choice in putting him on the list! Now we just have to pray that he gets a heart before another unnesisary heart surgery happens:( his Glenn! He will be outgrowing his shunt and if he does that before the heart shows up he will have his Glenn procedure done which is not beneficial to him:(
Share This Update!


08/05/2013
by SHELLY SCHISEL KAUTZA
Well the family is on the road and back off to see Castan!
I am excited to get new picures and updates to post..
Thank you to Mary Ann Kangas for taking so many nice pictures, Im headed to Walgreens now to print some off!
Share This Update!


08/04/2013
by SHELLY SCHISEL KAUTZA
Wow! What an amazing day for Castan! So many people came together to support him and the turnout was amazing, family that we have not seen in so long surprising us, hand delivered generous donations by Draeger Oil and Wagners Shell, between the set up , generous friends willing to help and the outpouring of everyone in the community is just great! Castan is our little hero and in these times of adversity can bring people closer! Channel 7 did interviews and taped our balloon release! That can be seen online as well as a lot of pictures and interviews!!! Thanks again so much but it is unfortunately it is just the beginning, the waiting process for the new heart and praying for a speedy recovery!!! Check out brew we pictures!  I miss him so much and can not wait to go back !
Share This Update!


08/02/2013
by SHELLY SCHISEL KAUTZA
WoW! Things have been so busy over the past couple of days! The news broadcast was a huge hit and there were not a whole lot of dry eyes out there, certainly not mine! It was so beautiful and touching, the photos and videos were all so real, ones I've saw before but as they all come together it hits home for sure.
Well tomorrow is the big day ! The weather is supposed to be amazing and that is one of my wishes come true! There is going to to be so much to do and see , great prizes, good food, fun and friends and family!  I will be doing a balloon drop sometime in the day before dark, there will be 15 red and 15 blue balloons to be set off, I think Ill have the kids there take care of the launch! Each balloon will contain a message that has a picture of Castan and a message that reads " Sending up prayers to Heaven" So you can bring me down an Angel heart"  and if found contact this website!   I decided to do that not just for awareness of Castans story , but mostly to say a prayer for the family of the child that will donate the most precious gift, a heart for Castan, so I ask everyone to think of this child, family ,we don't know when it will happen or where or how, boy and girl, but this is important to us that they are thought of.
Well Im sure those awesome nurses down in Milwaukee are spoiling Mr Castan rotten while mom and dad and sisters are away , but don't worry little man they will be back soon to give you all kinds of smootches:)
Thank you everyone for the prayers, donations and support!
Hopefully see ALL of you tomorrow at 2pm , Smittys Bar and Grill downtown Antigo!
<3 Shelly
Share This Update!


07/31/2013
by SHELLY SCHISEL KAUTZA
Castans beautiful smile will soon be seen by all! 
Share This Update!


07/30/2013
by SHELLY SCHISEL KAUTZA
Thanks Ken and Steph Zingler for the sketch of Castan and u can also bid on a sketch of your very own!!!  Also the Zinglers and their little boy also beat the 100 heart donation by doubling!! Thank you from the bottom of our hearts!!  Well its almost show time !!  Stay tuned!
Share This Update!


07/29/2013
by SHELLY SCHISEL KAUTZA
Thank you so much Milwaukee Forge for wearing Castan on the back of your shits at this past weekends Tri ing ( tri atholon) for kids held at otowa lake! Proceeds went to the Childrens hospital and a picture of Castan was represented! Thank you so much for thinking of him:) as well as a few shirts of our own to keep as momentos!
Share This Update!


07/25/2013
by SHELLY SCHISEL KAUTZA
Pictures of Castans walk around the hall, and his big sister Maddie holding him now posted! 
Ron and Marlena are now carrying pagers and anxiously awaiting Castans new heart to arrive! I have also been sleeping next to my phone :)!!!   Sooner it comes the sooner he comes home!!


Share This Update!


07/23/2013
by SHELLY SCHISEL KAUTZA
What a great 24 hrs!  So many generous people were thinking of Castan today!!! 
There were a few offline donations that I added, they were given personally. 
Castan was able to leave his room today and take a wal with mom all spiffed up in his HANDSOME outfit! 
He looks so great without his headgear on! I almost didn't recognize him!!! Missing him so! Lets have another good one again tomorrow Castan ! 
Share This Update!


07/22/2013
by SHELLY SCHISEL KAUTZA

ITS BEEN A GOOD MONDAY!
I RECEIVED A CALL TODAY FROM ONE OF MY VENDORS ( MILWAUKE FORGE) AND THEY WILL BE PARTICIPATING IN THE TRI ING FOR KIDS TRIATHOLON ON OTAWA LAKE ON SUNDAY ABOUT ONE HOUR FROM CASTAN!
EVERY YEAR MEMBEXR OF THE COMPANY PARTICIPATE AND THIS YEAR THEY ARE DEDICATING THEIR EFFORTS TO CASTAN! THEY WILL BE WEARING RED SHIRTS WITH CASTANS PICTURE ON THE BACK WITH HIS NAME AND ENTITLED EITHER "RUNNING" "SWIMMING" OR "BIKING" FOR CASTAN. SEE LINK BELOW FOR MORE INFORMATION:

http://www.racedayeventsllc.com/content/tri-ing-childrens

Proceeds are goign to the Milwaukee Childrens Hospital were children just like Castan will also benifit! Great idea!

Thank you so much Michele Feld and Milwaukee Forge for thinking of Castan and our family! I can't wait to see the pictures and the shirts..
~Shelly.


Share This Update!


07/21/2013
by SHELLY SCHISEL KAUTZA
It looks like Castan had a few visitors monthly as well as his big sister Maudie singing him twinkle, twinkle little star!  See new photos! 
Share This Update!


07/21/2013
by SHELLY SCHISEL KAUTZA
Castans 2 months old!  Everyone gets to watch you grow and pray for you! Thinking its time for me to make another visit! 

Thanks to everyone who continues to help out!
Share This Update!


07/20/2013
by SHELLY SCHISEL KAUTZA
Ron and Marlena have now made it public that Castan is a priority 1 heart transplant canidate. This is a very tough decision for them but listening to the medical staff at the Childrens Hospital, they realize that it is probably best , please continue to pray for them and his new upcoming challenges~. 
Share This Update!


07/18/2013
by SHELLY SCHISEL KAUTZA
Good Morning everyone! Theres a few new pictures of Castan from yesterday! Check em out.
Share This Update!


07/17/2013
by SHELLY SCHISEL KAUTZA
Also a special thanks to an out if state supporter of Castan who sent a $40.00 Check/Dollar Donation direct to Castans account, ! 
Share This Update!


07/17/2013
by SHELLY SCHISEL KAUTZA
Thanks everyone! Well i got a little update on Castan! He is slowly weening off some of his meds which is great but hes being a little fussy, which is to be expected, his body has to get used to doing without them and thats all it has known since his surgery! So happy he is able to be held and made to feel good during all of this! I posted a few new pics and I he is trying to suck pn his nook, so awsome to see him doing was babies do!  Pray for happy days to come , Thanks~ Shelly
Share This Update!


07/15/2013
by SHELLY SCHISEL KAUTZA
Day 1 has been a success! Thank you all to have donated and please keep spreading the word and sending prayers! 
I have added some new pictures from the last few days! Castan I see spent the day catchin up on Spongebob re-runs and hanging with his sisters! I also noticed he looks to have a new little memory foam mattress added to his bed, makes me feel good he's comfy when he rests!!! Thanks again!!
Share This Update!


07/15/2013
by SHELLY SCHISEL KAUTZA
The website is now linked with Castans account at Covantage so you can simply make a donations on line through this link! Its quick easy and SAFE!
thanks!
Shelly
Share This Update!


07/15/2013
by SHELLY SCHISEL KAUTZA
The website is now linked with Castans account at Covantage so you can simply make a donations on line through this link! Its quick easy and SAFE!
thanks!
Shelly
Share This Update!
Supporters

Supporters

Comments

Comments


Spread the word
More photosView Gallery

Gallery

Widget code for HEART BEATS FOR CASTAN, A CHILD WITH HLHS

Copy the embed code shown then paste it on your site. You can select from 3 premade sizes.

x

Just copy the code above and paste it on your site!