Mateo's third open-heart surgery and a vent have changed his life!

Surgery and Recovery: after Mateo’s heart surgery on May 26th he had an amazing recovery! He was sitting up by the next day, even though he was sedated and probably in a lot of pain he just wanted to sit up and get moving. Only after a week after his surgery we were transferred out of the ICU to the seventh floor (general paediatric floor) where Mateo started showing signs of respiratory distress. The doctors determined that his distress was likely not due to his heart as he was requiring little oxygen and his blood oxygen saturations were the best they had ever been (a sign that the RV to PA surgery was a complete success). The issue was actually in his airway, for some reason he was struggling to breath and sounded very coarse. He had a sleep study done, through which it was discovered that he had sleep apnea and the respirology team suggested that Mateo might need ventilation support. This was not shocking to us, as Mateo has had a very complicated airway since the day he was born with glotic atresia. This means that his airway was very small when he was born and it was being blocked by tissue they had to remove. After the sleep study and many professionals getting together to discuss Mateo’s case it was determined that he would benefit from going down to the PICU and going on a ventilator. Mateo had struggled for two weeks, not being able to breath, having to get many inhalations of cyprodex (a sterioid to help with swelling), ventolin (to open up his lugs), and saline nebulizations to help him breath. When they finally took us down to the PICU it was a relief for him and for Kyle and I - as seeing your baby struggle to breath is very hard and debilitating, we felt that there was nothing we could do to help him.

Mateo on the vent: we went down to the PICU on a Saturday and they put Mateo on a vent right away. His respirology team at first thought that maybe he could be on the vent for sleeping and napping and on his regular home MyAirvo2 when he was awake. But turns out that four days after he went on the vent ENT decided to do a scope of Mateo’s Trachea and they found out that Mateo has severe TracheoMalacia (which means that the cartilage that keeps his airway open is soft and was partially collapsing) which was making it very difficult for Mateo to breath - a new diagnosis for him. So this meant that Mateo needed the vent to help keep his airway open and that he would need the vent 24/7. At first Kyle and I were shocked to learn that his condition was so severe, but then after talking to the doctors we realized that the treatment was simply for him to use the vent for now, with the hope that overtime his trachea would get stronger and eventually he will not require the vent. As soon as Mateo went on the vent we saw a complete change in him, he had more energy, he was happier, he was not struggling to breath anymore, he was playful, he had better sleeps at night and was able to do more activities during the day.

A big THANK YOU goes out to his cardiologist, his cardiovascular surgeon Dr. Honjo and team, his cardiac anesthesia team, everyone at the CCU and PICU, his complex care team, music therapy, child life, his PT who came to see him every day even while he was struggling to breath and gave us good tips in how to help him progress as well as teaching us how to handle him after his third open heart surgery and everyone else who was involved in Mateo's care.

The combination of a successful open-heart surgery and using the ventilator to help his airway was a game changer for Mateo and his quality of life!