Baby Kyzak and Family Need Support
Donation protected
Baby Kyzak is the second born of identical twin boys; he and his brother Caspin arrived December 5th, 2015 to the proud parents of Buck Smarch and Aurora Johnsgaard (big brother Diego and big sister Taya). He is only three and a half months old and he has already experienced two medevac trips, a heart surgery, two blood transfusions, two viruses, three bacterial infections, and two life threating close calls requiring CPR. He has undergone numerous X-rays, CT scans, blood tests, and has basically been poked and prodded from birth. He has been hooked up to practically every type of machine and monitor in the Intensive Care Unit and has been on too many medications to count. He was diagnosed with a very rare heart defect, which is the root cause of all his medical issues. Currently a stent is being made in England which would open his airway and should they proceed with the surgery baby Kyzak will be the 1st patient to have this done at the BC Children's Hospital. It’s a rare case and risky surgery.
On Sunday, January 3rd, Kyzak's mom took him to Whitehorse General Hospital because he was having severe breathing difficulties and turning purple. He was sent by medevac, along with his parents and twin brother, to B.C. Children's Hospital in Vancouver. There it was revealed that he had a vascular ring caused by a double aortic arch (an extra blood vessel branching off the aorta and forming a ring around the trachea, constricting his airway). On Thursday, January 7th, at one month old, Kyzak underwent a successful heart surgery.
The trachea is still very narrow in the affected area, due to the vascular ring squishing it and preventing it from being able to grow and develop properly while Kyzak was in the womb and for the first month of his life. The trachea walls are still floppy and soft and cave in on him when he exhales. This floppiness is called tracheomalacia and it causes raspy and wheezy laboured breathing. After recovering from the heart surgery, it was believed that Kyzak could outgrow this without any further medical interventions, so on January 21st he was allowed to return home.
He was home less than two weeks when he got sick again and was readmitted to Whitehorse General Hospital. On Thursday, February 4th, Kyzak was sent back to Vancouver by medevac.
He relies on a ventilator to breathe, which stays connected to a tube down his throat or to a face mask and provides him with oxygen and positive pressure to keep his airway open. He requires various sedatives so that he does not move around very much and bump any of the tubes out of place. He has a feeding tube in his nose, through which he receives the milk that Aurora pumps for him.
Sometimes he gets close to being better, but then he gets worse again. His heart stopped on two separate
occasions. He developed two cases of hospital related pneumonia from prolonged use of the breathing tube and a bacterial infection in his blood from his PICC line. The longer he is there, the more complications arise, lengthening his recovery time. So far the family has been in Vancouver over a month and a half this time around, and three weeks the first time. They are expecting to be there another couple months, and possibly longer depending on his progress and what type of treatment options he receives. A tracheal stent and/ or a tracheostomy are two separate surgeries that he may possibly require before he can go home.
All of the family's time is dedicated to their sick baby right now as well as caring for their 3 year old daughter Taya and son Caspin who are also down there with them. Being suddenly uprooted to an unfamiliar city is tough for Taya and being separated from their identical twin must be hard on both boys. Buck and Aurora take turns spending time with Kyzak in the Intensive Care Unit, while the other parent watches Caspin and Taya in in the hospital waiting room or play area. They can't often all go in together due to the risks of spreading germs, and because Taya is too energetic to be in that environment. Because this is such a difficult time for the family, and they are already worrying so much about their son, we don't want them to worry about money too.
We all know it can be expensive to be away from home. There are the normal day to day expenses of living in your current location, as well as all the regular bills piling up at home. We know everyone is praying for baby Kyzak and sending all their love, but if some of you would like to help financially, a small donation would be very much appreciated. This is to help with any costs associated with the situation. If you are unable to help, but know others who can, please share this on your wall. We are holding on to every bit of hope that he only requires minimal surgeries and is able to get stronger. He is a little warrior and already made it through so much. Thank you all so much X
On Sunday, January 3rd, Kyzak's mom took him to Whitehorse General Hospital because he was having severe breathing difficulties and turning purple. He was sent by medevac, along with his parents and twin brother, to B.C. Children's Hospital in Vancouver. There it was revealed that he had a vascular ring caused by a double aortic arch (an extra blood vessel branching off the aorta and forming a ring around the trachea, constricting his airway). On Thursday, January 7th, at one month old, Kyzak underwent a successful heart surgery.
The trachea is still very narrow in the affected area, due to the vascular ring squishing it and preventing it from being able to grow and develop properly while Kyzak was in the womb and for the first month of his life. The trachea walls are still floppy and soft and cave in on him when he exhales. This floppiness is called tracheomalacia and it causes raspy and wheezy laboured breathing. After recovering from the heart surgery, it was believed that Kyzak could outgrow this without any further medical interventions, so on January 21st he was allowed to return home.
He was home less than two weeks when he got sick again and was readmitted to Whitehorse General Hospital. On Thursday, February 4th, Kyzak was sent back to Vancouver by medevac.
He relies on a ventilator to breathe, which stays connected to a tube down his throat or to a face mask and provides him with oxygen and positive pressure to keep his airway open. He requires various sedatives so that he does not move around very much and bump any of the tubes out of place. He has a feeding tube in his nose, through which he receives the milk that Aurora pumps for him.
Sometimes he gets close to being better, but then he gets worse again. His heart stopped on two separate
occasions. He developed two cases of hospital related pneumonia from prolonged use of the breathing tube and a bacterial infection in his blood from his PICC line. The longer he is there, the more complications arise, lengthening his recovery time. So far the family has been in Vancouver over a month and a half this time around, and three weeks the first time. They are expecting to be there another couple months, and possibly longer depending on his progress and what type of treatment options he receives. A tracheal stent and/ or a tracheostomy are two separate surgeries that he may possibly require before he can go home.
All of the family's time is dedicated to their sick baby right now as well as caring for their 3 year old daughter Taya and son Caspin who are also down there with them. Being suddenly uprooted to an unfamiliar city is tough for Taya and being separated from their identical twin must be hard on both boys. Buck and Aurora take turns spending time with Kyzak in the Intensive Care Unit, while the other parent watches Caspin and Taya in in the hospital waiting room or play area. They can't often all go in together due to the risks of spreading germs, and because Taya is too energetic to be in that environment. Because this is such a difficult time for the family, and they are already worrying so much about their son, we don't want them to worry about money too.
We all know it can be expensive to be away from home. There are the normal day to day expenses of living in your current location, as well as all the regular bills piling up at home. We know everyone is praying for baby Kyzak and sending all their love, but if some of you would like to help financially, a small donation would be very much appreciated. This is to help with any costs associated with the situation. If you are unable to help, but know others who can, please share this on your wall. We are holding on to every bit of hope that he only requires minimal surgeries and is able to get stronger. He is a little warrior and already made it through so much. Thank you all so much X
Organizer
Claudia Boop
Organizer
Whitehorse, YT