Tuesday, December 21, 2010

I'm tired

Everyone is sick and I'm exhausted. Ella sounds atrocious but her fever is gone. Lily has an ear infection and an upper respiratory infection. Drew can't stop coughing and we're waiting on the results of his throat culture to make sure there's nothing terrible going on down there in those weird little lungs of his. I feel like my head might explode and could very possibly lead Santa's sleigh with the color of my nose, but haven't had a moment to get to my doctor. I'm hoping we will all be getting over this very soon, but am worried that at least one more of us will be on antibiotics before all is said and done.

We saw his CF docs yesterday and went in with a list of questions. Its not that I'm unhappy with how things have been going, because all things considered, hes doing alright. But theres so much uncertain and unknown about CF and how unique each person who has it is and I just had some questions. What are the long term effects of having him on so many antibiotics? How long do we plan to keep him on them, until he sounds better? Is he on more antibiotics than the average CF baby? Most CF kids aren't on Pulmicort - does he need to be? What's the plan for the next bronch? What are they looking for? What are they hoping to see? What if they don't see what they wanted to? How important is it that this happens? Is there any concern about developmental delays because of so much time spent doing treatment. Whats critical to get in in a day? Our daily schedule - he only really has about 3 hours of "free time" vs. Lily for example who has about 6 - she's crawling, he barely uses his legs. How sick is he? Am I naive thinking that hes doing alright? Given the malacia are we being extraordinarily careful? Is he more succeptible bc of the malacia? Will he definitely get over the malacia? With all of the new drug therapies in the pipeline, if one of those drugs addresses one of his two mutations (delta F 508) will that be enough or do both mutations need to be "fixed" for the visible signs of CF to go away? How are we doing?...just to name a few.

We got good answers to all of those questions. I could probably write a book if I tried to write out an explain all that we discussed, but it was all positive. The hard and frustrating thing is that a lot of it is just unknown. We know that the malacia and the strange structure of his lungs aren't helping him any, but its unclear whether or not they are directly hurting him. The next bronch, scheduled for February, will help to determine if things are changing. They are expecting to see the same or improvements from what they saw last time. At some point we will do a hi-contrast CT scan to see if he has any lung damage. We hope beyond hope that there is none yet, though its inevitable that it will come at some point. We're stopping antibiotics...for now. The past 6 weeks on three different kinds hasn't really changed anything much, but now that hes got this new cold hes actually worse so we'll see what the culture shows and take it from there.

The answer to my question about being naive about his condition was answered just the way that I had hoped. While he has spent time in the hospital and on antibiotics, most of what has been going on with him is not directly related to him having CF. CF complicates the whole thing, but your average joe with CF doesn't exhibit a lot of what is going on with Drew. Its malacia, and its the artery on the trachea issue, and its the abnormal anatomy of his lungs. The CF makes all of these other issues complicated, but without the CF they would still be in the picture. He's a big boy - 22lbs at 9mo old. He's breathing well. He sounds awful but hes not sick and thats a good thing. So I'm not being naive. He's doing alright. Could things be better? Of course they could. But they could also be an awful lot worse.

I'm hoping to hear back on his sputum culture today or tomorrow or Thursday at the latest and I'm hoping that its good news. I'm also hoping that my head doesn't actually explode and that my children start to feel better so that we can all get some much needed sleep. I'm hoping that everyone taking the time to read this realizes how much it means to me that you care enough to check up and I wish you all the best this Christmas and always!


  1. Erin,
    I continue to pray for all of you! Hope you are all well for Christmas. Thank you so much for your blog, I have learned so much about CF! I work for a biotech company, and I have been asking them - Why not start on a CF cure!!! I talk about Drew all the time...hopefully we will get back there soon so we can see all those beautiful Moore children...oh and you and Martin too!! Stay strong Erin, you are an amazing Mom!

  2. we are thinking about you guys! see u jan 1