Sunday, August 18, 2013


We got the results of the bronchoscopy.  It showed that she had cultured a type of bacteria called moraxella, so we started treating it with an antibiotic (Suprax).  Moraxella isn't one of the scary ones in CF that cause a lot of problems, thank goodness.

She started Pulmozyme on Monday to help break up the thick mucus and at first she wasn't sure about this whole nebulizer thing, but the last few times we did it she decided to stop fighting us.  So that's progress!

She isn't coughing or wheezing anymore and is back to her happy little self again!

She has clinic on the 11th so I'll update again then!

Monday, August 5, 2013


E had her bronch this morning and did so well.  She was super sweet and snugly afterwards as she was coming out of anesthesia.  

When he was finished, Dr. R came out and told us he saw a lot of thick mucus secretions in her lower airways.  It was more than he expected to see in someone her age.  While having thick and sticky mucus in the airways is a common CF problem, it is not common to have this much so soon.  So he suggested increasing her CPT and starting Pulmozyme .  The Pulmozyme is an inhaled medication that will help break up and thin the mucus, making it easier for her to get rid of.  So our new daily routine will consist of 3 vest treatments,1 neb treatment of Pulmozyme, and albuterol 1-2 times a day.  I'm going to have to get very creative to keep this kid still long enough to get it all done!  Too bad she doesn't like to watch TV yet.

I have mixed emotions after this morning.  I wasn't really expecting to hear that there was anything abnormal going on.  I figured he would get a sample, send it off to the lab and then tell us in a few days that there's nothing growing in her lungs and I need to quit overreacting to every little cough she has!  

I'm a worrier.  I can't help it.  And I never know if my worrying is warranted or if I'm just a crazy overprotective mom who needs to chill out and let her kid cough in peace!  But apparently this time it was good to be the crazy overprotective mom that calls the CF clinic way too much and asks a million questions.  Because we found out something with the bronchoscopy that we wouldn't have otherwise known.  Normally our clinic doesn't start Pulmozyme until 2 years old.  So now that we know she needs it, she can start it early and hopefully start feeling better.

We'll find out later this week if there is any bacteria in there that needs to be treated.  

Sunday, August 4, 2013

Figuring Out The Inhaler

We recently added an albuterol inhaler into the mix.  If only she was this happy when we were actually using it!

So far, she's not a fan.  But I'm hoping it will get easier the more we do it.  I do think it has helped with her wheezing, though!