Some of the best advice that I've ever received since Jeb's CF diagnosis was to make sure I was Jeb's voice. I need to be his advocate, the one who'll watch out for him and make his life feel normal. I need to question even the best doctors if my gut tells me to. And my gut has been twisting and turning for the past 4 months over pectus.
Pectus, also known as sunken chest, is often a result of hospitalization of a CF patient. In this case, it's Jeb. We knew it was there since he was 15 months old when the doctors kept looking at it as a sign of pneumonia. It stayed even when he got better, a name was never given for it and the doctor said not to worry. I got the same answer when I asked about his ribs being misshaped on his left side -it will correct itself.
Speed ahead 1 year and into our Chicago CF life. Dr. M immediately said Jeb had pectus and it needed to be treated. Not just by anybody, but by Mary Massery, a PT who has written the book on how to treat pectus. And we had 6 months to wait to see her, which left me 6 months to question it.
In the meantime we started on physical therapy from Children's to get the ball rolling. Every Monday from 9:00 - 10:00 Aiden and I sat and watched Jeb play games. I was getting frustrated but knew that it was working when Jeb could finally wheelbarrow walk.
Finally, right before Christmas, we got to see Mary Massery. I knew she was the best, but all I expected was for her to give us some more exercises and stick us with a big bill. But instead what she gave us was hope. For one full hour she asked us all kinds of questions. And then she looked at us and said, 'this is unbelievable, I've never seen a CF kid like this...so healthy.' She went on to say she has been dealing with CF for 30 years and she distinctly remembered treating a pectus CF 19yr old back then. His plan was to go to college. She had shut the door behind him and thought, 'why waste your time on college - you are just going to die.' Then she looked at us and said, 'you know that by 2013 the average age for CF will be 50 and Jeb is not your average.' Hope. Then she asked how we got into Dr. McColley. Her exact words - 'she's the best of the best and doesn't take new patients. How did you get in?' Prayer.
So, the pectus. Jeb took off his shirt and she said, this isn't bad and it's doesn't look like a CF pectus. It points a different way (can't remember the details of this), which means it's genetic. We explained that we think Jacob and Tom have it, which she said was likely. She also said that his ribs protrude and I said that I thought mine did too. She told me to hold up my shirt, which I hesitantly did and she said, 'yep, he got that from you.' Poor Jeb, the receiver of some of our worst genetic mutations. Correcting genetic pectus is difficult, but with exercises it can be done and it cane be done mostly at home through games. YES! PT is down to once a month and then gradually decrease if he is doing well. Hope.
We often walk away from major appointments feeling down. Mary was one of the first doctors that brought us up. It's a huge step for us. I remember the phone call confirming CF and the doctor's exact words of 'you have my condolences.' Those words struck me and still do - those words are always associated with death. There are no need for condolences. In fact, if I go with my gut, I know there is no need at all. It will be a rocky road, but Jeb will be ok. We all will be.
Amazing how an appointment for one thing can lead to something else. Thank you Mary Massery for your gift to us this Christmas.
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