Wednesday, February 20, 2013

Let's Try Something Else

Three weeks ago, E caught a cold or virus that gave her a stuffy nose and a cough.  Since it didn't go away after a week, the protocol is to start an antibiotic to treat her for an upper respiratory infection.  She took Keflex for 2 weeks and the cough is still lingering around.  It's not worse, but it's not gone.  After talking to her CF Clinic nurse today, we decided to start another oral antibiotic - Cipro.  She'll take this for two weeks and if the cough is still not gone, we'll go in for a bronchoscopy. 

Why do we have to put her on all of these antibiotics if it's just a junky cough and some congestion?
Her sisters have the exact same thing and we're not treating them for anything.

Here's why...
Since we all passed around this respiratory virus, we all had coughs and congestion.  The good news for us is that we are able to get rid of the congestion on our own eventually.

E doesn't really get to just "wait and see" if it goes away.  The mucus in her lungs is so thick that it is the perfect place for bacteria to hide out and cause problems.  That's why if a cough lingers around like this, it is usually a sign of a CF flare up in her lungs.  Every time she has a CF flare up, there is the possibility of causing permanent damage/changes to her lungs.

So, if antibiotics and extra airway clearance (Chest PT) are what she needs, then that's what we'll do.
Let's hope this does the trick!

Wednesday, February 13, 2013

Clinic 02/13/13

CF Clinic....I look forward to it and dread it at the same time.  I like going because she gets checked out by so many different people who are making sure she is growing well and staying healthy.  But seeing all of those people takes a long time!  And it's not so easy to keep a baby entertained when you're sitting in a small room for two hours during her nap time!

But we survived!

I had a lot of questions to ask about giving enzymes before she eats.  E normally eats 3 meals a day (baby food and formula) and then has an extra bottle at some point.  There have been times lately when I wanted to give her a bite of a cracker or something else that I happened to be eating but I hesitated because she hadn't had any enzymes.  I asked about how that would affect her and if it was okay to do that.  They told me that having one bite of something isn't likely to cause any problems, but if she wants to keep eating she needs to take the enzymes or else it could cause her stomach to hurt.  So basically, I don't have to panic if she eats a bite of something without taking enzymes first!  Good to know!

She gained almost 2 lbs since her last visit and weighed about 17 lbs 14 oz today.  
Great weight gain!

Now for the not-so-fun part:
Right after I wrote my last post, E started to get sick.  She caught a cold and had a cough that lasted for about a week so I called and got her started on an antibiotic.  Today was day 9 on the antibiotic and we haven't seen any improvement. 

It's possible that she just has a cold that is lingering around for 2 weeks, but if she's coughing for that long it could be a sign of something else going on in her lungs.  Dr. R decided to keep her on this antibiotic for another week and if there's still no improvement we'll start Cipro (a different antibiotic) and inhaled Tobi.  

Hopefully it won't get to that point, but if so, at least we have a plan.  And that plan could always change once we get the results of her throat culture in a few days.  So I guess we'll just wait and see what happens.