Daddy, why do I need oxygen?

I just Love you Daddy! Thank you for taking such good care of me!

Look Mommy! No oxygen tubes and I am getting stronger. I can feel it!

Ross,

   Congratulations! You are well on your way to being weaned from oxygen while you are awake and playing! You have been doing so good and over the last four days keeping your oxygen saturation levels in the low to mid 90's. That is super! You may wonder why you have to be on oxygen at all and here is why. When they repaired your heart it was functioning so much better than prior to your surgery that your lungs were not used to working like they were supposed to. All the oxygen rich blood that wasn't all mixed up like before was causing what they call pulmonary hypertension. They added oxygen as a therapy for your lungs to get used to their new requirements now that your heart is functioning almost perfectly. You have been on a low dose of  O2 for over a year now and the hypertension is all but gone. Your cardiologist says that you don't need oxygen from a heart standpoint which leads us to the other issue for you needing it. Whenever you fall asleep your saturation levels begin to drop into the mid to low 80's. That is not terribly low but not good enough to be healthy for long periods of time as when you do sleep. Sometimes kids who have Down syndrome also have hypotonia (weak muscle tone). The doctors think that when you sleep your muscles around your trachea relax so much that it may allow it to collapse part way and slow down the amount of air you breathe in. So to make sure you do, we keep you on oxygen while you sleep.
Your therapist has some good news. She is licensed and trained to try a new type of therapy with you that might help your breathing and also swallowing strength. This new therapy uses very small electrical pulses to contract the muscles in your throat. If it works the way that we think it will it should help your tracheal muscles better support your airway and not allow it to collapse and decrease your need for oxygen while you sleep too. One step at a time buddy! We will get there eventually on your own time and we will do whatever we can to support these efforts!

I Love you Ross!

Daddy