Wednesday, October 13, 2010


Tomorrow at 8am, Jackson will have a big breakfast, his last good meal for a little while. Sometime after noon, he will get some local anesthesia and some sedatives to make him sleepy and relaxed. Then his doctors will send a small, flexible scope down his airways and into his lungs to have a look. They will irrigate with some saline and take a sample of mucus that lies deep within his lungs. This procedure will allow them to test if he has an underlying virus or infection that has not made its way into his throat and nasal cultures.

When I first learned of this possibility, it was scary. It seemed too invasive for his little body. But much like other aspects of CF care, I adjusted quickly in order to keep my boy as healthy as possible. This will give us some answers we don't yet have, and rule out underlying problems that could ultimately cause permanent scarring and lung damage.

Right now I'm not nervous. He had a great day, and really seems to have turned the corner on this illness. He's still a little clingy and moody, but he is smiling and playing again too, and his appetite is returning to its former ravenous state. Since being admitted he has learned to wave, click his tongue, and make kissy sounds. I have to keep him in the best condition possible. I have to keep those little lungs mint condition, because the answer is coming. The day is coming where CF will be manageable, not fatal. The day is coming.

To my CF family, I love you so much. Even though we are different, as individuals are like to be. Even though we've never met, I love every one of you as if we were blood. Thank you for giving us a place to be normal, and for the unflinching kind of support you can't find outside. Yes, I repeat myself, but- I love you so much.

Everyone else... I love you too. I still say I'm only human, and not worthy of your admiration, but I love you intensely for the unwavering support.

I will report again tomorrow, now that I've discovered how to blog from my phone. All typos must be ignored and forgotten until sych time as I return to a computer.


  1. I hope evrything has gone well Amy. It's hard sending our little ones down for any procedures but we all know it's for the best in the long run. It's a necessary evil I guess.

    Do whatever to keep our kids well.

    You are all in our thoughts and will check back regularly for news.


  2. A little late here... Hope everything went well. Wishing little Jackson a quick recovery!

  3. His mutation (also mine) is both a beast and not that bad. Normal life comes pretty easy with lots of treatment, but it's the treatment that will wear you down and is the reason I slacked off when I was on my own. If you keep it up for another 18 years, I'm sure there is be either a neutralizer or a cure by then.

    You're doing good.