Oxygen free since November 2020!

Mateo has been doing really well. Ever since his last cardiac catheterization in November he has not been needing oxygen. This has opened up the world for him, allowing his to explore the halls, open and close doors, and roll around freely on the floor without being stuck on wires and hoses. He has even learned how to lean closer to us when he hugs us, as his specking valve is way smaller than all of his other trach connectors and he is able to rest his head much more comfortably than he could before.

Mateo has needed oxygen since the moment he was born, and we never knew if he would ever be able to live without it. So, we are overjoyed in the fact that he is doing so well. The reason why he does not need oxygen is because the doctors found a new pathway going to his left lung that they had not seen in the past and they were able to dilate it, which means that more blood is flowing through it. We saw this as a miracle! You can see in the picture below the new branch/pathway that was found.

This is great news! Although, Mateo’s heart is still not fixed. As you know, he has a very severe form of Tetralogy of Fallot which makes things tricky for the doctors. Mateo will have a follow up heart catheterization in March to continue to open the new pathway that was found, as well as maintain the other pathways that have been established. From there the doctors will decide if they would like to present Mateo at conference, and depending on how his pressures are, he might be eligible to have his VSD partially closed, which would mean another open-heart surgery that would take him one step closer to having a “normal” working heart.

Mateo will be going for a sleep study tomorrow which will give us some more information about his sleep apnea and the Respirologist will be able to make changes to his vent settings if necessary. One question that people ask often is, will he always need the trach? This is a question that we don’t have the answer to, and neither do the doctors, it all depends on his progress. For now, we are grateful that he has the trach, as it has allowed him to be able to have countless procedures without jeopardizing his vocal cords, which can be damaged when someone needs to be constantly intubated for procedures, like he was when he was first born.

Mateo continues to amaze us with his perseverance, positive attitude and his love for the outdoors! here is a clip of Mateo pushing his walker through the snow.

We are also ecstatic to be able to hear his voice now when he wants something, or when he doesn’t like something. For the longest time, we couldn’t hear his cry or his laugh, so for us even a little screech from him is the most wonderful thing we have heard!

We hope tomorrows sleep study will show good results and that Mateo will continue to stay strong and healthy this winter season! Thank you again so much for reading our blog, and for all of your comments, messages, generosity and support.

Keep smiling, today is a new day to start anew!