I've had several people ask me why we are having Gavin do a bronchoscopy when we go in for his PFTs at the end of July. It is part of a research study that our CF clinic is performing. Our doctors are trying to figure out what kind of changes happen to someone with CF in their first year of life (I guess there is very little research on this). They are also trying to figure out if there are any ways to predict the severity of a child's CF at a young age. We agreed to do it because Gavin would already be sedated for his PFTs. If he was not having the PFTs we would not have agreed to the "bronch." Will it be a good day for Gavin (or us for that matter...)? Probably not. But the advancements in CF care would not be where they are today if people before us did not participate in clinical studies, and we believe that this research could provide some very valuable information for CF docs. We plan for Gavin to participate in any research study he feels comfortable with, but until he has the ability to make those decisions we as his parents are doing our best to make them for him.
Also, the University of MN CF patients live 10 years longer (on average) than the country's median age of 37. To me that proves that they are amazing doctors that know what they are doing and are doing everything possible for our son to live as normal a life as is possible.
I mean, come on...wouldn't you do absolutely anything to ensure that this little guy gets to live a happy, long life?
Also, the University of MN CF patients live 10 years longer (on average) than the country's median age of 37. To me that proves that they are amazing doctors that know what they are doing and are doing everything possible for our son to live as normal a life as is possible.
I mean, come on...wouldn't you do absolutely anything to ensure that this little guy gets to live a happy, long life?
I've heard great things about the MN CF clinic. I think you guys have the right attitude!
ReplyDeleteRonnie
A bronch is nothing major, and if he's being sedated, go for it. Its true that there has to be trials to learn new things in medicine. We've done a few trials before.
ReplyDeleteNathan will also be getting his first bronch soon but already had one PFT. I was a wreck but it sounds like your clinic has their act together.
ReplyDeleteI was wishing they would have done both at the same time for us but in retrospect I am glad they didn't because they were having trouble with the machine and sedation was wearing off.
If we have to sell our house and move, I will definitely consider moving near the MN Clinic.
Great! I'm glad you are participating in the study!! I know everything will be fine!
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