The one question we’re asked more than anything is, “When will Kyle be off the oxygen?”. Our response, we just don’t know… The process of weaning from oxygen is more complicated that one might imagine. I’ll try to explain…
When Kyle was born, he was placed on a ventilator for an extended period of time due to Respiratory Distress Syndrome. The Ventilator destroys the fragile lung tissue of the infant over time, causing Chronic Lung Disease/(Bronchopulmonary Dysplasia). From this link, you can see the early developing stages of CLD/BPD in a neonate born at 25 weeks. The “haze” is the developing disease. As the tissue is destroyed, pockets and cysts form in the lungs. In it’s most severe form, the lungs appear much like severe pneumonia (completely white), with cysts still partially visible. As the new tissue develops, cysting may still be present, but the new tissue will build around it – allowing for greater lung capacity. Children that suffer from moderate BPD will typically overcome their breathing challenges by the age of 2-3. Children with advanced/severe BPD may never fully recover, or have a prolonged recovery time. This however, does not mean that the child can’t heal faster – it just means that it’s a longer “unknown” process.
Kyle’s official diagnosis at discharge from the first NICU was Severe BPD/Chronic Lung Disease. In earlier x-rays Kyle’s lungs, in their most severe state, appeared equal to that of an elderly man diagnosed with severe Emphysema. In this illustration, you can see how the damaged tissue forms the cysts. Fortunately, neonates and young infants are constantly developing – it’s this Development Stage that is so vital. They have the ability to overcome more than an adult in degenerative state.
Upon discharge from Loyola, Kyle’s official diagnosis was moderate BPD/Chronic Lung Disease. Initially, we had hoped that he would be off the oxygen by the holiday season. However, with every illness, it was yet another set back. How these illnesses affect each child can vary – but one thing is consistent with Chronic Lung patients… It’s swift and damaging. When we were discharged, Kyle was on 1/2 litre of oxygen – within two weeks, he caught his first “Real World Cold”… We sat a 2 litres of oxygen for two months after that. Then slowly, things started changing for us. By Christmas, we were back to “baseline” (1/2 litre).
As we quickly approach Kyle’s 1 yr Due Date anniversary, we will once again watch another hopeful milestone pass… We had held within our hearts a glimmer of hope that by his 1 year corrected age date – he would indeed be fully off oxygen. With only 10 days to go, it’s become evident that we will not make that goal. However, it will not pass us without progress.
In the past week, as he’s been recovering from Pneumonia, Kyle has had a little bit of light shine down on him… His oxygen levels are maintaining between 1/8-1/32 litre of oxygen. During naptime and for a couple hours here and there, we’ve even managed to be oxygen free. It was during one of those special moments that we were able to capture this picture.
I don’t think I can even begin to form the words that will express how very special this moment was, and what it truly means to us. We know that we haven’t reached the end of this road quite yet – but I’m starting to see the signs for the turn coming ahead… When we get there, it will take us to a much better place than we’ve been in for the past 16 months. But regardless, the place we are in now – isn’t so bad… Because we have our beautiful son here with us.