Some of you will remember that back in January we went to Sheffield and Dylan underwent a fit to fly test. Even though he passed that particular test, all it actually showed was that he could cope with the reduced oxygen level during a flight, it didn’t test how he would cope with the pressure changes sadly.
During air travel, any air in an enclosed space will expand. For example.. we took a sealed tube of Pringles on a flight and the lid popped up and the foil on the top blew up like a big bubble. However when you return to sea level the air goes back to normal as did the tube of Pringles.
The theory behind Dylan not being safe to fly is that his air filled cysts would expand, but then these would return to normal at sea level so this part isn’t too bad as long as his lungs coped during the flight. We also theorise, thanks to the Pulmovista machine he was on during life support, that most of Dylan’s cysts aren’t walled off completely, as it showed that air does move in and out of them as he breathes. We’ve also seen evidence of this from CT scans where the cysts appear larger when he takes a big inhale. This should mean those wouldn’t expand at all. However, If any popped and caused a collapsed lung, the air in the chest cavity would expand and cause more of a problem than a normal collapsed lung, such as what is called a ‘tension pneumothorax’ and this can crush the heart and other organs.
In this country there is no equipment available to test how his lungs would cope with the pressure changes during flight. There is a case study of a boy in New Zealand with PLCH and lungs like Dylan, having a Hypobaric Chamber test post treatment, which had no effect on his lungs, and he then went on to have many safe flights.
When we saw Dylan’s respiratory consultant back consultant in April we spoke in great length about all of this as he had been researching into it. He knew of the case in New Zealand and of a colleague with a similar lung condition who had taken himself on test flights, starting off with short ones then gradually progressing to longer ones and now flying regularly all over the world. It was his opinion that now Dylan has been two years without a lung collapse, that it was potentially safe to try him on a short flight if we were fully prepared. We talked about every possible scenario and what could happen and how to deal with it. No doctor would ever say that it’s definitely safe for him to fly, because nobody knows. His condition is so rare there very is little to go on. The only way we would ever find out would be to try truthfully as he may have these cysts for the rest of his life now and he may want to see the world one day! It is a risk, but so is getting in a car, on a train, crossing the road etc. And we knew the risk was smaller now than originally thought.
Armed with all this knowledge, monitoring equipment and a ‘just in case’ plan we made the decision to let Dylan fly home from Paris with Daddy whilst I drove back. We went back and fourth about the decision over and over again, even at the point of boarding, but we took the leap! He was absolutely fine and actually had better oxygen levels than in the fit to fly test!!
Whether we decide to continue taking him on flights is undecided, and we certainly won’t be jetting off around the world any time soon, but it’s a start!
