Moraxella

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!

Bronchoscopy

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.  

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!

Frustrated

Right after we finished her last round of antibiotics, E started up with the runny nose, cough and congestion again.  We tried to keep her nose clear and added in extra vest time to see if we could get rid of it, but it wouldn't go away.  

After 10 days of this coughing and wheezing I took her in to get her throat swabbed to see if she cultured anything this time.  The rule is to put her on antibiotics after she has been coughing for 7 days.  But I don't like the fact that we just automatically put her on an antibiotic without knowing whether or not she actually has an infection.  So that's why we did the throat culture first before starting meds.

Well, now 6 days later she is only growing normal flora.  Nothing showing up in her upper airway.  But her cough is getting worse.  

So what is causing this to keep happening over and over?  I know kids get runny noses and all the junk makes them cough.  That's normal. But hers seems to last forever.  

Is this just a normal CF cough?  Is she always going to sound like this?  What if there is something bothering her that we can't see?

With all this thick, sticky mucus hanging out in there she is bound to attract some bacteria that will cause problems.  So after talking with her CF clinic, the next step will be to take her in for a bronchoscopy.  I'm not really sure how I feel about this.  I want to see if there is something in her lungs that she's not culturing in her upper airway.  But there is also a chance that we won't find anything and she will have gone through all of this for nothing.

So that's where we are.  They are calling me sometime in the next few days to schedule the bronch for Monday and we'll see what he finds (or doesn't find) in there.

Predictable

Somehow E has managed to stay on this schedule of getting sick every other month since she was 4 months old.  It always starts with a runny nose, then sometimes a little fever, then a cough.  She gets cranky and doesn't eat very well.  Then the nose clears up but the cough lingers.  And after a week or so of increased airway clearance and no change in the cough, I have to call and get her started on an antibiotic.
This time she's taking Septra.

Fortunately, her last several sputum cultures have only shown "normal flora" so hopefully we can keep that up! 

Clinic 06/12/13

This was E's last clinic visit as a part of the BONUS study.  I'm really glad we were able ot participate in the study and hopefully help researchers to understand how different babies with CF grow in their first year.

We had to do a few extra things this visit. She had a chest x-ray and blood draw that she was not happy about. :(  Her weight is up to almost 20 lbs and she grew an inch since her last visit.  Yay!

Her vitamin D level was pretty low so we'll be supplementing extra vitamin D on top of the AquADEKs she is already taking.  Since most people with CF do not absorb fats properly, they have a hard time absorbing fat soluble vitamins (A, D, E and K) so we have to give her those vitamins with enzymes every day.

She hasn't been on antibiotics since April, and her sputum culture only grew "normal flora" so everything is looking great!

I'm looking forward to a fun-filled summer with my healthy, happy girls!

Tulsa Great Strides

This weekend we had family walking for E in Tulsa since they couldn't be at the other walk with us!  Thanks so much for going and for sending pictures, Nana!  We love you guys!

ONE Year Old!

My baby is ONE!

It's amazing how much they change in the first year.

I wasn't sure what life would be like with 3 kids.  Going from 1 to 2 was really hard for me.  But E has been such a good baby.  It's pretty crazy that with all of the meds she is on and the airway clearance we have to do, she still seems like my easiest baby!  No inconsolable crying, no pacing around the house for hours at a time trying to get her to calm down.  She's been sleeping through the night since she was about 2 months old, which is pretty much the best thing a mommy could ask for.  She is amazing.

I am so thankful for every day I get to spend with this precious little girl.

Happy Birthday!

Great Strides 2013

Great Strides is the Cystic Fibrosis Foundation's largest national fundraising event.  The money that is raised helps to support life-saving research, care and education programs to help those with cystic fibrosis.

Several months ago, Ryan and I decided to form a team for the Great Strides walk in our area.  When I registered, I was asked to enter an amount for our team's fundraising goal.  I entered $1000 thinking that I could surely get that if I asked everyone I knew and really worked hard to get the word out.  I sent an email to our family letting them know about the walk and asked if anyone wanted to donate or join our team.  One by one they started signing up.  Our team grew and people started raising money.  Everyone was excited about it and we actually had people who had never even met E sign up to walk with us!  This was our first walk and we had 24 adults and 10 kids on our team!!!

On the day of the walk, the weather wasn't very nice at all.  It was cold and windy and miserable but that didn't stop everyone from coming! 

I am so proud of everyone for getting the word out and sharing E's story.  I don't have the official numbers yet but I know that we have raised at least $19,000 for the Cystic Fibrosis Foundation!  Yes, you read that right.  NINETEEN THOUSAND!  Never in a million years did I think we would raise that much money!

Every single person on our team did an amazing job and I cannot even begin to tell you all how much we appreciate it.  I do have to give a special thanks to Uncle Eric for raising $8,000 on his own!  Unbelievable!

***Update: Our final total was $20,100.00!  WOW!!***

 There were "hero awards" for all the kids who have CF and each one got to go up and receive their medal.

Then it was time to walk!

All that walking wore her out!

Love my little hero!

Clinic 04/10/13

E had a pretty good clinic visit today!  She's been feeling great for the last month and a half or so.  No more coughing or congestion.  Yay!

She weighed 18 lbs 10 oz and is still 27 in long. 

Her weight is good but the dietician wants us to try to get a few extra calories into her every day.  I really do try to give her an extra bottle most days but she very rarely takes it.  So we'll work on that.

Also, Dr. R mentioned that he wanted us to come in for a throat culture in between clinic visits.  Since she is being seen every two months right now and it will change to every three months after she turns a year old, he doesn't want to risk her getting a bug that we don't know about until it has already made a nice little home in her lungs!  (Those weren't his words but that's pretty much how I understood it!)  From what he told me, this is not something that all clinics do.  But I'm realizing more and more how proactive he is and I think it's great that he wants to know as soon as possible if she cultures pseudomonas so that we can treat it and keep it from causing too many problems.