Wednesday, September 22, 2010

I do not know best

I read a blog that I shouldn't read. I haven't in a while, I had give it up. But I checked in today and I wish I hadn't. Its a mom, just like me, but she's loved and lost. She lost her baby to CF and her anguish and pain are unbearable to read about. That's why I had stopped reading. I don't know why I read today.

Drew had a CF appointment yesterday and they were thrilled with the changes in this breathing. They even took him off of one of the inhaled medications and we're going to give that a try. Hes got a cold now though. A GD FREAKING COLD!! GRRR!!! I know I can't prevent it but I want to so so bad. He sounds terrible again, like he sounded before the surgery. Coughing a lot, sounds like hes always got a frog in his throat. I wish I could make it go away.

The thing about going to the CF docs is that they always tell you that you know more than they do. NO I DON'T! I know my son better than you do, but I don't know what to do for him. I don't understand this disease he has. I don't know the difference between a bronchodilator and a corticosteroid and whatever else these different medicines do or benefits they provide. They always say "Well we can try this" or "What do you think about doing that" when what I want them to say is "This is what we need to do". I don't know if I'll ever hear that because no one knows what exactly needs to happen because everyone is affected differently. That's what I hate. I hate that and I hate how much this affects our whole family. Yesterday, I took Drew to the appointment alone because the girls had colds. So I had to wake up Lily early to feed her before I left, and then Drew's nap schedule was all screwed up because of the appointment so when I tried to put him to bed when we got home he woke up Lily, who also has a cold and is miserable. In the evenings when Ella wants to play she is often put off because we have to take care of Drew. We do our best to make sure that one of us gives her some attention because she needs that, but shes noticing how much time we spend with Drew, both at home and at the doctor. It just sucks.

I shouldn't have read the blog today. I'm tired and stressed out and worried again because he has another cold and hes already on antibiotics for this last issue so the last thing he needs is more mucus blocking things up. He has another bronch scheduled for Oct. 5 to check things out and make sure the antibiotics cleared everything up, and if there's still mucus he will go back into the hospital for IV antibiotics. The one thing that the CF docs are all certain about and agree upon is that at this age, eradication of any and all bacteria to the extent possible is best thing to do. I'm hoping for a clear bronch. Thank God its not this week because I know I wouldn't get the news I want.

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