Holy Moly! What an INSANE past 3 days! After Matt received an email from a father of a 4 year old girl with SMA explaining to us that flying can be dangerous for children with SMA, I started to do my own research and found out that the air pressure in a plane can very negatively affect Charlie's already labored breathing, because she is so weak, and have SERIOUS consequences! Whoa.
When we were first given the news about Charlie's illness we immediately reacted with telling the neurologist and our pediatrician that we wanted to take a trip. As the weeks went by, and the severity of Charlie's terminal condition began to sink in, we thought about the trip and decided against it; we just felt like it was more for us then for Charlie. At Charlie's pediatrician appointment last month, the doctor asked us our vacation plans, when we said we'd decided against it, he explained to us how he didn't think it was selfish and that it would actually be good for all of us as a family to go and enjoy ourselves and make memories...so, we felt better about our vacation plans and went ahead and booked our trip. When we took Charlie for her monthly check-up at the pediatrician this week, we discussed what we'd been told by the father of the 4 year old girl, and asked,"was Charlie in danger?" He didn't think so and said he'd never heard of such a situation, but called our respirologist to be sure, he came back into the room and told us there were risks and that a lot of things had to be in place before we could go, IF we could go. Matt and I were very let down, a little because the trip was planned and booked, and a lot because we felt our pediatrician could have put Charlie's health in severe danger because he recommended something without researching it first. We trusted him and just believed in what he said and made decisions based on his educated advice.
Yesterday Matt called our pediatrician and told him that we felt let down by him and that our confidence was shaken regarding whether or not he could properly care for Charlie, he apologized and said he'd shoulder the blame. After thinking more about it, Matt and I forgave him and understand that because SMA is fairly rare (I'd never heard of it before Charlie's diagnosis) we can understand that he probably hasn't worked with many children with SMA and is learning more about it as we go along, but we also realized that we need to be Charlie's number one advocates, and research everything on our own as well...two heads are better than one.
So, that leads us to where we are now. With the help of our pediatrician, friends, Matt's bosses, our community health nurse, a medical supplier, Fed Ex, Air Canada, and Charlie's home nurse...our trip to Hawaii is going ahead this Saturday! We have been provided with a nurse who will do two return trips to Hawaii to accompany us on the plane there and back, staying a few days in between to help us out. We are very grateful. Fed Ex is delivering a ventilator (in case we need it on the plane) tomorrow morning...they didn't have an extra one available in town for us, so they had it flown out. We've also called the airline and requested the bulkhead seats and a basinette and made sure they had oxygen on board. So, we're all set! I can't say I'm not nervous though, I am not ready to see IF Charlie is in danger and needing CPR or oxygen, and if something happened to her, I don't think I could forgive myself. This is all strictly precautionary, but still totally nerve wracking. We love her so much, and when we get there safe and sound, I know we'll make memories that will carry us through some very dark days in the future. I can't wait to smell the hibiscus flowers and dip Charlie's toes in the ocean!