Thursday, May 14, 2009
Jonah's Diagnosis
Jonah had a very successful trip to Denver Childrens hospital. We met with some of the best, and feel very fortunate to have done so. His diagnosis, Bronchiectasis. This was a shock to the doctors as well to my husband and I. I have read as much as I could on it but I still have questions that books and internet surfing can't provide. If your child has this or if you know of someone who does please let me know. I have a lot of questions about quality of life and so on. He just has the Bronchiectasis he does not have Cystic Fibrosis. Thank you all!
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5 comments:
Hooray for a diagnosis! That's one big step in the right direction. Good Luck finding out more information on it.
I will ask a friend of mine if she knows anything about it. I'm glad you had a successful trip.
Finally a diagnosis. This is a huge step as it will now guide you in his care. So glad to hear that your trip was a productive one.
I am so glad that Jonah has his diagnosis too. It makes you feel like you at least have a starting point and something to learn about. It's impossible to learn about something you don't know what it is. I am glad that you are doing OK. Please keep me updated on little Jonah. I think about you often and wonder how you are. Hugs to you!
Hey Jessica. I finally got the internet working again and have a response from Rhonda for you.
I'm so glad you got some answers. I'm sorry you feel you didn't get quite ENOUGH answers. Why don't you google National Jewish and find their # and call and ask if they have any info they could send you. If they do I know they'll be happy to share it. They may have other resources as well, even though they didn't treat or diagnose Jonah.
I know the basics about it but was under the impression it was caused by frequent infections. If that's the case then I would guess it's from the prematurity of the lungs and inability to fight things off well.
I also heard that physiotherapy (pounding of the back in a specific way) like they do for CF kids is a good treatment to loosen the mucous as well as antibiotics. That's really all I know but definitely research, research, research! You might even call your local pulmonoligist to get more information. Good luck!
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