Friday, July 16, 2010

Here's where we're at

So Drew's been in the hospital now for 4 whole days and doesn't sound much different than when we went in. They were expecting some improvement which leads them to believe there may be a few different things going on.

First guess (and my favorite) is that it isn't bacterial, and that's why antibiotics aren't helping. They are treating for the "worst case scenario". In the CF world, bacteria in the lungs is "normal" to some extent. They had believed that there was maybe more bacteria in his lungs than they had originally thought and that a stronger IV antibiotic would help to eradicate anything living in there. Because its not getting better with stronger antibiotics, they think that maybe its not bacterial but viral and will just have to work itself out. That would be great news if it weren't a CF problem but just a bad cold that hes taking a little extra long to get over!

The virus they are actually leaning toward thinking he has is bronchialitis now. Basically, its bronchitis of the lower airways. It happens in everyone, not just CF people, and it sounds bad but its just a virus and will work its way out. Anything that is not bacteria festering in his lungs is okay with me.

You might be wondering why they can't just figure this out and treat it. The thing is that they can try, but it wouldn't be the least minimally invasive process. In older kids, they are able to cough up some of what they have and send that off to a lab to be analyzed to see what bacteria exactly is living in the lungs. In babies like Drew, he regularly has the back of his throat swabbed to determine what, if any, bacteria is present. This is a fairly good way to see what is in his lower airways. If they truly want to see whats happening down they, they need to take him to the OR, knock him out, intubate (as in ventilator), then send something all the way down to his lower airways to collect a mucus sample to send to the lab to see what hes got. Again, the throat swab provides a pretty good view of whats happening down below, but its not 100%.

So based on other kids and the way he sounded when we went in on Monday, they treated for "worst case scenario" which would be bacteria they didn't see from the swab that was growing in his airways and would be rid by stronger antibiotics. Since its not working, they are just trying to figure out what path to take next. They kind of want to rule out anything and everything bad before they say its just a virus, lest it get worse, but they also don't want to do any unnecessary procedures.

I love them at Childrens. I really really do. They care about him and about us. His CF doctors come in to see us several times a day and sit with us to brainstorm and ask questions and see what we think about his care and whether hes getting better or worse and they listen to us and I just love them. Now I just want them to pinpoint whats going on so we can get the H outta there and come home.

This leads me to another topic on my mind which I think I wrote about once before - germs. This hospital stay changes the story for me. I am paranoid and I'm allowed to be. Judge me for it if you want, I don't care. My baby has CF and germs can make him sick, very very sick. I'm going to be cautious. You can't come into my house unless you are willing to use hand sanitizer upon entry. You can't hold Drew. Sorry. If you have, had, or are getting a cold, please don't come over. He will get colds, he will get sick, but if we can avoid it we will. I ask for your consideration. I'm not just a germaphobic paranoid mama. I'm the mama of a very sick little boy who I cannot imagine living without.

I think when we first found out about the CF diagnosis we were both uneducated and a little naive. It is a scary scary horrible disease. The reason the average life expectancy is only 37 is because there are people who die with it when they are young. We are hopeful that the new drugs on the horizon will change thing. Another blogger friend said it perfectly the other day - "Tears flow to think about never having to hear the words "Life Span" again!". But right now, today, I realize the severity of this awful disease. Drew is 4 mo. old and has spent 6 weeks of those 4 months in the hospital...because of CF. It is robbing him of his childhood and us of our baby. I don't want to lose him, ever. I want a cure. Our hope, of course, is that he does lead a healthy, happy, normal life. And right now the only way that I know to ensure that is to keep him as healthy as I can.

So that's where I'm at. Now I'm going to bed. Spending 10 hours in a 10x10 room with two 4mo. olds takes a lot out of a person :)

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