Tuesday, August 2, 2016

Upper GI Series FAIL

We had an emotional day yesterday. E went in to get an Upper GI Series and dysphagiagram because her CF team thought she might be silently aspirating. I watched a video with her before we went, showing her that all you have to do is drink something and they take pictures of it going down your throat. No big deal! I bribed her with chocolate milk and skittles and whatever she wanted to have for lunch (she couldn't eat anything before the test so I knew she would be really hungry afterwards.)

Well, it was awful. She was totally fine until she tasted the nasty barium and after that she didn't want to do it anymore. She refused to drink anything, refused to lay on the table, and kept saying she wanted to leave. I really thought i could calmly talk her into cooperating but when that didn't work I let the radiology team take over and they strapped her to the table and used a syringe to get something down her throat. Once she started spitting it out, they said the next step would be to stick a tube down her throat. I told them I didn't want to do that because there are way too many other procedures she has to go through and I didn't want to traumatize her with this one. So, we stopped the test.

When we left she asked if she could have her chocolate milk and skittles and I told her no because she didn't listen to us and do what she was supposed to do. 

Then I cried the whole way home.

I hate that she has to go through all of this. I hate that I have to teach her to listen to the doctors and nurses and cooperate for procedures, when all I want to do is scoop her up and hug her and give her all the skittles and chocolate milk in the world. I know she was scared. I would have been too. She never knows what's going to happen when people start messing with her at the hospital. 

Not giving her the reward I promised was the hardest thing.  I couldn't give it to her when she didn't cooperate, because PARENTING!  But I also know that having CF is hard and doing tests like that is scary and sometimes it's just nice if people give you skittles!

There is no parenting manual, much less a CF parenting manual, that tells you how to handle these kinds of things.  We're winging it.  Sometimes we have good days and sometimes we have bad days. Yesterday was hard for both of us.

Monday, August 1, 2016

We Love Summer!

This summer has been wonderful, health wise.  And it's not because we're hiding out inside.  We've done plenty of fun stuff with the kids.  We've taken them to the library, science museum, water parks, swimming pools, the lake, the peach orchard...we've done it all!  And everyone has stayed healthy.  It has been so nice to have a couple of months where we don't have to worry about extra meds and treatments.  And I'm soaking up every second of it because I know when school starts that will all change!
Since most of my posts are about clinic appointments and illnesses, I thought I would share some pictures of Emery just being a kid and enjoying her summer!  







Friday, June 10, 2016

Clinic - 06/08/16 and Her First PFT

Emery had her annual clinic appointment on Wednesday where she gets a chest x-ray and labs done.  She's a pro at this chest x-ray thing, fortunately...or unfortunately, I guess.
Her lungs looked great and she even got to try doing a Pulmonary Function Test (PFT).  This measures her lung function and it's a test she will do each time we go to clinic so that we can keep track of any changes.
video


She is always so cooperative with everything the doctors and nurses ask her to do.  But the one thing she dreads is the throat swab.  Every time we go, they swab her throat to check and see if any new bacteria is growing in her upper airways.  It must have hurt one time because she absolutely will not open her mouth to let them do it anymore.  In fact, she bit a tongue depressor in half trying to clench her teeth closed and keep them from getting in there.  It took 4 nurses, 30 minutes, and lots of bribing with toys and cookies and anything else we could find to finally convince her to open her mouth and let them do it.  It was rough on all of us!  But instead of getting frustrated, everyone was so patient with her.  They listened, they explained things, one nurse got her throat swabbed just to show her how easy it was.  I can't even explain how appreciative we were that they did all of that.
After the throat swab fiasco, we were too drained to go get her labs done so we'll have to go back another time to do that.

She weighed 33.7 lbs which was about 1 lb less than she weighed last month, but since her BMI is good and she met her weight goal for the year, they weren't too concerned about the weight loss.

Tuesday, May 24, 2016

Friday, May 20, 2016

Great Strides 2016

There are times when the words "thank you" just don't seem like enough.  
This is one of those times.
I don't know what other words I can use to let people know just how much it means to us that they took the time to show up in support of Emery and our family to participate in Great Strides.
Even to those who couldn't come to the walk, if you made a donation, asked for donations, bought a shirt, or even just shared a Facebook post, it all makes a difference!
Last year we raised $33,729.
This year we actually topped that number raising $34,826!
How is that even possible??

The amount of love you all have shown us over the past 4 years since we found out Emery had cystic fibrosis is unbelievable.  THANK YOU from the bottom of our hearts!














T-Shirt Day on Social Media

Every year we sell Emery's Angels shirts as a fundraiser for the Cystic Fibrosis Foundation.  We like seeing everyone in their shirts so we encourage people to post a picture on social media with a link to their Great Strides page, our facebook page, Emery's video or something else CF related to help us raise awareness.
It makes my heart so happy to see all of these pictures fill up my news feed!















Wednesday, April 27, 2016

Pneumonia and Hospitalization

I always hear people talk about how CF kids can be doing really well and then all of a sudden out of nowhere it changes.  Well let me tell you, it's true!  One Friday afternoon we were eating ice cream and having fun at Chick-Fil-A and about 3 hours later Emery had a fever and was complaining that it hurt to breathe.  I normally wouldn't overreact about a fever and a little cough, but when my baby says it hurts to breathe that got my attention.
After talking with her pulmonologist and trying albuterol, we didn't see any change.  She was still complaining about pain so we took her to the ER to get checked out.  Her chest x-ray looked good, she was negative for flu and RSV, no signs of respiratory distress, so they said it was probably a virus and sent us home.  
The next day her fever was higher, she was still complaining about pain and things just didn't seem right.  We took her back to the ER and they found pneumonia in her upper right lobe.  The difference in her chest x-ray from Friday night to Saturday afternoon was pretty significant.  

She was admitted on Saturday afternoon for a CF exacerbation and started a round of IV antibiotics. 

 We also realized she was constipated and that was another reason she was complaining about pain.  After a couple of days on antibiotics, some miralax, and increased respiratory therapy, she was looking much better and we were told we could finish out her IVs at home.  

Sweet girl staying busy in her hospital room.
Her mood completely changed when visitors came in!


 They put a picc line in on Monday and we went home on Tuesday.  
She was ready to get out of there!

Friday, March 11, 2016

CF Clinic

E had a routine check up at the CF Clinic yesterday.  I stopped at the gift shop to grab some mints and we ended up leaving with this lovely overpriced baby doll that laughs when you squeeze her tummy.
It kept her busy for 2 hours so I guess it was worth it!

She is finishing up a round of antibiotics for a cough that she had a couple of weeks ago so she is feeling well right now.  The only concern they had was that she didn't gain any weight since her last appointment.  She has always done really well with weight gain so it's not TOO concerning right now.  We'll wait and see how it goes for the next 3 months and hopefully by her next clinic appointment she will put on some lbs!  

Friday, February 26, 2016

Nasal Endoscopy

I haven't posted much about E's health lately because there wasn't much to post, thankfully!  She saw the ENT in December and again in February and he used an endoscope to check for new polyp growth in her nose.  The first time she saw the scope she was afraid he was going to try to put the whole thing in her nose!  But after we explained it and she was able to look at the inside of her nose on the tv screen, she was fine.



She does have some new polyps but since they haven't been causing any problems, he decided to leave them alone for awhile.  
We'll go back again in May unless something comes up before then!

Monday, January 4, 2016

Ready For a New Year

2015 was a year full of ups and downs.  
At the beginning of the year, I was frustrated about E's health and the fact that we were doing the same things over and over and expecting different results...
Insanity?  Yes!  
None of it made any sense to me, but I'm not a doctor.  I'm not supposed to know how to handle complicated cystic fibrosis related problems.  So when they told me "kids just get runny noses" or "she's too young to have sinus problems" or "time to start another round of antibiotics" I just went along with it.  I was frustrated and confused and I felt like no one was listening to me.

At the same time, our family was ready to start our annual fundraising for the Cystic Fibrosis Foundation.  They have all been so supportive and wonderful and excited to get involved in raising money for CF, but I just wasn't into it.  I was completely ready to forego Great Strides last year and just take some time off from fundraising because the everyday stress of CF was more than enough for us to handle.  But luckily, I was talked back into it.  With the help of our family and friends and people we don't even know, Emery's Angels raised over $33,000 for the Cystic Fibrosis Foundation.  I look at that number now and I can't believe I thought about taking a year off!

One of the big highlights of the year in the CF community was the FDA approval of Orkambi for CF patients ages 12 and older.  It is the first drug to treat the underlying cause of cystic fibrosis in people with the F508del gene mutation (which is what E has).  This breakthrough would not have been possible without the help of the Cystic Fibrosis Foundation and all of the wonderful people who donate year after year.

In addition to the extraordinary amount of money we raised, we also figured out why E was getting sick so often.  Nasal polyps and blocked sinuses.  After 2 sinuses surgeries, one in June and one in September, she got some much needed relief.

We know there will be hurdles to jump in 2016 as well, but this little firecracker is ready for whatever the new year brings!