Jason Steven Schweinberg
Jason's Senior Picture
Jason was born on 6-27-84 with a rare congenital heart defect.
He was 8 lbs.1 oz. and scored well on his apgar. It wasn't until
the next day that the doctors heard a murmur. A team of specialists
came in and he was diagnosed with Tricuspid Atresia ASD and VSD.
He was very blue and was put into ICU. His family was told that
it was very rare and he would eventually need many surgeries.
His mother tells of how devastating this news was to them.
They kept wondering why this happened.
No one had the answers.
Jason came home after 3 days in ICU for monitoring. He returned
every 3 weeks for echoes and other testing. The doctors said
not to let him cry very long and so he spent a lot of time being held.
His mother tried to breast feed but he would tire easily and
so he was switched to the bottle. He didn't eat very much,
slept all the time, wasn't growing very well, and he was very blue.
At age 17 months he had his first surgery. The doctors were amazed that
he was able to wait that long. They thought that it would have
been sooner. Jason was a very strong willed baby that always proved the
doctors wrong! He had a BT shunt put in since the ASD was closing.
This was a temporary procedure since the doctors didn't feel he
could handle open heart surgery quite yet. The surgery went well.
His mother says: "I will never forget how pink he was in recovery!
I never realized how blue he had been until that moment. I started
crying out of joy for my little baby who was now pink!! We
spent 3 weeks in the hospital and came home 3 days before Christmas.
What a wonderful Christmas present that was!"
After that surgery Jason's eating improved, he was growing well,
and the blueness was gone. He progressed better than the doctors had
thought. His family was told that he would need open heart around
age 3. Well Jason proved them wrong again...He waited until almost
age 5!! It was time for surgery again around age 4 1/2. He
would get out of breathe, tire easily, and he was turning blue again.
He had the Fontan procedure done and again his parents saw a pink
little boy in recovery! Even though he was hooked up to so
many machines, all his mom really noticed was his pinkness.
He had a difficult time getting the anesthesia out of his
lungs so they gave him bubbles to blow in his oxygen tent.
He really liked that!! Even though he was in a lot of pain....he
kept a great sense of humor. He was always wearing
his funny nose glasses and his hats!
The nurses were amazed at how he handled everything...
he actually made it easier for everyone! He never once complained...
not even when his lungs filled with fluid and they had to put an emergency
chest tube in. He was a very courageous little boy who made everyone
laugh even when he hurt so much. After 2 months in the hospital we finally
got to go home!! Jason went home on Lanoxin, Lasix, and potassium.
The doctors said that he would be on Lanoxin the rest of his life...
but Jason proved them wrong again! Six months later he was off the
Lanoxin and 3 years later he was taken off the Lasix and potassium.
He had no meds and was doing fine until age 12. He then
started to tire easily, his coloring wasn't right, and had frequent
migraines. The doctors put him back on Lanoxin and aspirin.
Schweinberg family ~ Christmas 2000
Make A Wish
On Dec 23, 2000 Jason was granted a wish from the Make-A-Wish
foundation. He was given a big screen TV, DVD player, cd rewriter,
base surround sound, 6 DVD's,$50 to buy more DVD's, and a
satellite system installed! They also brought him popcorn, candy,
and one of those m&m dispensers! His mom wrote, "I have never
seen him smile as much as he did that day. I am in such awe of
what these people have done for him!" He would invite his friends
over for movie nights as well as his family. Everyone really
loved "Jason's room". He shared his wish with everyone.
Jason started auto mechanics at a vocational center and he loved it!
He was even been talking about going to Wyoming Tech after graduation.
He found something that he loved doing. Jason and his dad
were best friends, too. They did everything together.
Jason in his new truck
Jason got his driver's license on March 3, 2001. His mom teasingly
warned everyone to stay off the road in Illinois since Jason was
now driving! He loved to drive and would even offer to run
errands and take his sister where she needed to go. A good
friend, Jim, gave to Jason a truck. Jason spent many hours
working on this truck ~ even when he was feeling so bad ~
he never gave in to his illness.
Jason and sister Becca having fun
Since Jason was 16, he was always tired. His heart would race a lot,
it was hard for him to sleep, and he had many migraines.
Jason was also having some problems with his liver. In March he
even told his mom that he was ready for the next surgery.
He was tired of being so sick and fatigued.
Hailey, Jason & James spending time together.
Jason had an ablation done 4/19/01. This is where they go in with a
catheter to close off any pathways that scar tissue has caused.
They were hoping this would take care of his tachacardic
arrhythmias and he would feel and function better. He was in surgery for
6 hours and had some difficulty coming out of the anesthesia.
The day after the ablation, it was apparent that it had failed. Jason
was feeling worse than ever. He had another episode of tachacardic
arrhythmias....it lasted for about 2 1/2 hours!! He was very
uncomfortable and his whole family was very upset. They were really
hoping that the ablation would really help him. Jason was put
back on betablockers which slowed his heart rhythm, but it also caused
his blood pressure to go too low, caused poor circulation
making his arms and legs turn purple, and he would sleeps all
the time. He couldn't go to school. It was apparent that the
next surgery would have to been soon.
Throughout the next few months Jason continued to decline and
lost 25 lbs in 3 months. Jason's parents made appointments
for him to be seen at Mayo clinic for tests. They left for
Mayo clinic on July 20th. He had a full week of testing and
the doctor there believed that he was in right sided failure
(which is what his parents suspected). Jason had his heart surgery
on August 2, 2001. When they went to take him off bypass they
couldn't get him off. They had to leave him on bypass called ECMO.
In a week's time Jason had 5 more surgeries and was finally listed as
an emergency heart transplant. He got his heart, but sadly, his
body was just too week, and on August 9, 2001 at 8:30 am
Jason left this world to go home to Heaven.
Jason, Rebecca (Becca), James and Hailey
Jason has touched so many lives. He really lived life to the fullest
and he never sweated the small stuff. He had his priorities
set right. He did a lot of positive things the last month.
He reached out to all of his family, he became closer to Becca,
he spent 10 hours working on his cousin's car in the heat because
he wanted to help. There were 2 days in between the clinic and
surgery and he insisted on his dad taking him home to see his
friends and family...His dad drove him the 7 hours home
just to stay for 2 days! Jason called everyone he knew
those 2 days and he had a great time.
Andi & Jason~Best friends since kindergarten~with Hailey, too!
Jason and his dad would go fishing at night. They had their own
star to guide them. They would leave to go fishing when their
star became visible and when the morning light made it too hard
to see, they knew it was time to go home. They kept the
star between the two of them until after Jason's death.
Steve (Jason's dad) then shared the story with the family
and every night they go outside and find Jason's star.
Jason is watching over them now.
Jason's friends were telling some of their stories about him....
he was called the "risktaker" He really knew how to have fun!!!
They said that he was always laughing and he wasn't afraid of anything.
He had a good life and he fulfilled it every day...he didn't just
sit around and feel sorry for himself.
Here is a story in Cathy's (Jason's mom)own words:
"A teacher called me the other day to tell me that because of
Jason's influence on her...she decided not to retire...
she said that he taught her so much."
At the hospital in Mayo, Becca would sit with Jason all day
just waiting for him to move his hand or his toe. She doted
on him and stood by him through it all.
Jason's funeral was really nice. The principal spoke and a few
others told stories. The picked some of his favorite songs and
his friends: Brian, Anthony, Conway, Doug, Jim, and Bill
(Jason's uncle) were pallbearers. They all wore Harley shirts
with eagles on them!! Jason always loved the eagles...
he said that they were freedom to him. Jason's headstone
will be jet-black (his favorite color) and his senior picture
laser etched with 2 eagles and a picture of him and his truck.
It will read: Don't cry for me now, my spirit is free.
I'm soaring with the eagles. I'm free ~ son, brother, friend ~
Cathy (Jason's mom) tells how Brian, Anthony and Chad
drove the 7 hours up to Minnesota to support Jason while he was
in the hospital. That was such a great thing for them to
do for Jason. Also, Mike, Brian, Jim, Chad, Doug, and Anthony
have been such a support to Jason's family. They go to the
Schweinberg's every day and help them and Becca out.
They share stories and memories of Jason. They are family
now. Cathy said, "To me its a tribute to Jason to know that
he picked out such wonderful friends and that Jason knew
that they would be here for us and us for them."
Jason had a very close relationship with his 3 year old sister,
Hailey, as well. On the long ride home from the hospital,
Hailey asked where Jason was. Her parents hadn't told her yet that
he had died. As they were saying that Jason wouldn't be coming home,
Hailey replied. "I know. He flew up there." pointing up to the sky.
When Hailey went to the wake she gave him a flower and said,
"Good bye Jason, I love you...go with the angels now".
Jason's Memorial Page
Cathy Hosts CHD Quilt Show
Make A Difference Day 2002