**THIS HAS BEEN CHANGED TO A MEMORIAL FUND**
*update of Callens journey at the bottom*
Callen is a 4-year-old child with, HLHS-hypoplastic left heart syndrome. This syndrome has put him at the end of many scalpels and has now added him to the heart tranasplant list. Callen currently lives in Calgary with his mom, dad and two sisters. As a family and many times, a divided family they have to travel from Calgary AB to Edmonton AB (4-hour drive) to visit with the best doctors. The money raised with this page will help the family with traveling costs as well as lost wages for their time spent away from work.
Read below for Callens full story.
December 18, 2013- found out we were having a boy but also found out something might get wrong with his heart
Jan 6, 2014 diagnosis confirmed, HLHS-hypoplastic left heart syndrome, only the right side of his heart developed, we were then told he would need a series of open heart surgeries to make it so he could survive with only half of a heart.
May 6, 2014, we relocated to Ronald McDonald house in Edmonton
May 26, 2014 at 1:51pm Callen was born and transferred to the Stollery Children’s Hospital
May 30, 2014 Callen had first open-heart surgery Callen the Norwood, which took 11 hour, he had some complications and needed to be put in ECMO-extracorporeal membrane oxygenation, a form of life support
May 31, 2014 Callen had a cardiac Cath and it showed that he needed to have another surgery immediately. He was taken back to the operating room and 5 hours later he came out in a much better place, no longer requiring life support!
June 28, 2014 Callen required a diaphragmatic plication due to his left diaphragm being paralyzed, basically they put in a suture to keep it from squishing his lung.
July 1, 2014, we get transferred to our home hospital
July 28, 2014 we finally get to take Callen home! He came home with a feeding tube and oxygen. He also needed several medications including one called enoxaparin, which is a subcutaneous injection that he needed twice per day.
October 27, 2014 Callen needs to have another open-heart surgery, this is called the Glenn, this one goes much smoother!
November 7, 2014, we go home!
February 13, 2015 Callen is having a hard time breathing and his oxygen saturations are very low (60’s) a few tests are done and it is determined he has pneumonia and well as something called chylothorax, this is where the lymphatic fluids are leaking into the space around his lung and making it hard for his lung to expand. He has a surgery to put in a drain tube to help get the fluid out. In just over 1 hour the are able to get 400mls of fluid out, the drain stays in for about a week to make sure no more fluid builds up. He is put on a special formula to prevent the chylothorax from coming back.
February 26, 2015, we get to go home again!
May 30, 2016 Callen get pneumonia, which requires a short hospitalization, we are home in just 3 days!
Callen does really well and has no major issues, living a relatively normal live.
August 18, 2017 Callen has to go back to Edmonton for another open-heart surgery, this one is called the Fontan, this was the fastest surgery yet, 4 hours and our boy came out looking really good, his surgeon was very happy with how everything went. As soon as he woke up he was asking for food and juice. After 4 days in the ICU we were able to go to the ward and prepare for home, we were only on the ward for about 3 hours when Callens breathing got more labored and his oxygen requirements we steadily increasing. His nurse called a specialized team in to asses and they concluded that he needed to be taken back to the ICU. He was getting worse and no one knew why, they ended up having to put a breathing tube in because he was getting to weak to breath on his own. A few days later it was discovered that he had chylothorax again, that meant be would need another surgery to remove the fluid, called a decortication as well as more drain tubes needed to be put in. We had to put him back on a special diet low in fat to keep the chylothorax under control.
September 6, 2017, we get to go home
September 27, 2017, we take Callen off the fat free diet. (6 weeks is the recommended time to let the chylothorax heal)
November 28, 2017 Callen is having trouble breathing again, he is also very lethargic and his oxygen saturations were in the low 70’s, they should be in the 90’s. We took him to the emergency room at our local children’s hospital, he has 2 viruses and the chylothorax is back again. He has more drain tube put in and again his oxygen requirements are getting more and more so on December 1, 2017 they transfer him back to Edmonton.
December 6, 2017 Callen has another decortication surgery, he is not strong enough for them to take the breathing tube out in the operating room so the waiting until he wakes up a bit more the same evening they take the breathing tube out.
December 7, 2017 Callen I’m not doing great and they have to put the breathing tube back in.
December 19, 2017 Callen has excessive bleeding from his drain tubes, they stop all anticoagulation medication, they get the bleeding under control. The doctor finds a blood clot in his Fontan pathway, and they try to remove it in the Cath lab, they are unsuccessful, it was too big and it if broke loose it could completely block of his airway or go into his brain.
December 20, 2017 Callen has more bleeding from his drain tubes, and his vitals are not stable. Callen needs emergency open heart surgery.
December 21, 2017 Callen goes to the operating room first thing in the morning. This is the first time I am terrified that Callen is not coming out of the OR but 9.5 hours later the surgeon tells us everything went great and he was able to remove the clot!
December 25, 2017 our first holiday in hospital, they were finally able to remove the breathing tube after having it in for 3 weeks!
January 4, 2018 Callen is moved out of ICU and on to the ward.
We spend the next 5 weeks getting stronger and trying to figure out the chylothorax. He must still remain on the fat free diet.
February 9, 2018 we are finally going home, after 10 weeks in hospital!
March 7, 2018 we are admitted to our local children’s hospital.
March 8, 2018 Callen gets a new diagnosis, PLE- protein losing enteropathy. Due to the fact that he now only has one functioning lung his Fontan pressures are too high and is causing his body to push protein rich fluids into the area around his stomach and intestines.
March 29, 2018 Callen needs to have a cardiac Cath done to see if there is anything that can be done to help. They decided that another decortication is our only hope in opening up his right lung, the chances of it working were low, about 10% but we had to try something.
April 12, 2018 Callen has the surgery and because Callen doesn’t do anything easy, he ended up clotting off his airways, the respiratory therapist was able to clear it
April 15, 2018, they took out the breathing tube, but after only 2 hours he was too sleepy from pain meds and he wasn’t breathing on his own so they had to put the breathing tube back in.
April 18, 2018, we weened him off all of his pain meds and the breathing tube came out. A chest X-ray was done and it was determined that the surgery was unsuccessful.
April 21, 2018 we the moved to the ward and on the mend, we try cpap to try and help open up his right lung but it was also unsuccessful.
It is determined that a heart transplant is the only option left for Callen to have a future that isn’t confined to a hospital bed.
May 2, 2018 Callen is put on the transplant list.
May 3, 2018, we get to go home, we have one more test to complete in hopes of dealing with the chylothorax (still on the fat free diet) which needs to be done in Edmonton.
June 10, 2018, Callen is admitted to Calgary hospital, for what seemed like flu symptoms.
June 11, 2018, Callen goes into respiratory arrest which leads to cardiac arrest. He has a breathing tube inserted. After an incredibly long time of doing chest compressions to keep his heart working he is placed on life support, and transferred to Edmonton.
June 13, 2018, Callen has a CT scan of his brain and it shows incredible amounts of damage but we are unsure how bad it is.
June 14, 2018, Callen has an EEG done and it shows there is no electrical activity.
June 15, 2018, all sedation is stopped so we can see what Callen is capable of doing, as well as another CT, as his abilities have decreased more. The CT looks worse and he shows us that the only thing his brain is capable of doing is keeping his heart beating. He can’t even breath on his own. A small portion of his brain stem is the only part still functioning.
June 16, 2018, we make the incredibly difficult decision that, that is no life for our sweet little superhero.
June 16-17, 2018, Family and friends come from all across the country to Give Callen hugs and kisses and say goodbye.
June 18, 2018, we held our little man, and cried as his life support was disconnected, he passed quickly and peacefully. He is now flying with the Angels and feeling no more pain. (And probably kicking God out of his throne because it looks comfy)
Callen just turned 4 on May 26th.