I have become an official blog stalker! As I'm sure most of you know I am obsessed with google and for the past several weeks since Jonah's diagnosis, I have been googling the hell out of Bronchiectasis. Yesterday I decided to type in Bronchiectasis blog... Just to see if people talk about it since it seems to be a foreign topic here in Utah. Guess what people are talking about it on their blogs. I am thrilled to have found this. Why? Well, since his diagnosis I have learned the basics. Like what it is, how its caused, how to maintain it. But I want to know how does this disease affect your life overall. What is Jonah's life going to Intel, can he play sports? Will he always be on O2? Will it progress even with maintenance? And will he end up needing a lung transplant? Just the stuff that would keep a hand wringer mom like myself, up for hours on end. I hope that by reading and learning about other peoples struggles/inconvenience with this disease will help educate and prepare our family for the future. When I bring up my concerns I get the typical doctor answer "only time will tell, we will just see how he does." well for a planner, this is a hard pill to swallow. I want to know now. Does anyone have a crystal ball?.........Any one??...........Any one???
You are not a blogstalker... you are doing 'research'!!! That is what I call it.... sounds better that way! I hope you are getting some answers. That is sometimes the hardest thing to get.... is answers to the future. Best of luck to you!!!
ReplyDeleteYou should post links to the blogs you are reading. I'm interested in reading them too!
ReplyDeleteI remember when Kathryn told me about you and Isaac getting married and then when you moved to Utah. I was working with Kathryn at a law firm, of course. She was my best friend.
ReplyDeleteI will post some tonight under Blogs I love on the right side of my blog.
ReplyDeleteI wish I had that crystal ball for you! If Dr's are giving you the run around and you *really* want to know stats you could ask the specialists SPECIFICALLY how other children (patients of his) that have the same diagnosis are doing now. Does he have any teenager patients or tweens? What are they going through at this point. I find that Drs are reluctant to give bad news and worry it'll be too hard so they skirt around the issue. I'm not saying that your sweet boy is doomed and that's why they won't talk, not at ALL becuase I have no idea!) but for some reason unless you ask very pointed questions they seem to keep quiet. Could be that they don't want to tell you best case because you might get your hopes up, or tell you worst case and have that crushing blow to you when your son's issues may not go that way either. He is a child, not a statistic and I like when Dr's have that outlook but if you're a planner like me it's easier to have some estimated guess as to how life will be in 1 yr, 2, yrs, 5 yrs.
ReplyDeleteAnyway, keep on keepin on...you're doing all you can for your precious son and that will only improve things. Knowledge is POWER!!!
FOUND SOME INTERESTING INFO.......GOOGLE THIS:
ReplyDeleteBROCHIECTASIS CHAT ROOMS........
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Wow, Thanks grammy. I have signed up for Broncjiectasis R Us but had no clue webMD had one as well. Great job!
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