February 27, 2014

Between little bouts of anxiety Kadyn was the ever proper princess She even talked them into letting her keep her dress on instead of the hospital gown in the OR. She LOVED that!

Kadyn did great!

I talked with Kadyn's doctor after...

Her right airway and passages are pristine

Left- not so much. It was not inflamed/red but it was swollen and still very compressed

We believe the major cause of Kadyn's continued problems (aside from CF obviously) is her narrowed airway.

Airways should look like owl eyes staring straight. Kadyn's don't... her left is a bit tilted. The left bronchial tube looks like a rigatoni noodle pressed in the middle.

On this left side they could see obvious signs of thick congested mucus that Dr Ner had trouble moving out/dislodging.

Overall, Dr Ner was surprised how well she looked.

From now on, when healthy, they want her to do 3 treatments a day instead of 2. Concentrating more on IPV than vest...3 is now her new normal.

Now we wait (3-5 days) to see what the virus panel and cultures say.

We are beyond words for all the love, support, positive thoughts and prayers We love you all so much!

February 26, 2014

Kadyn has not been well for over a month. She was not back to baseline even after 3 weeks of antibiotics. I would consider myself a positive person... However, I could not bring myself to post about Kadyn's clear culture results last week. My "momtuition" kept telling me something was not quite right. Based on the x-ray and progressive cough, Kadyn was admitted this evening. She will go under tomorrow morning for a bronchoscopy and PICC line placement. We will be here at least a week, maybe 2, depending on the results of her bronchoscopy.

Kadyn took the news extremely well. This was more confirmation to me that we are exactly where we need to be. Koy is home with Ryan for now. It's amazing how 3 hours away can feel like the other side of the world when you've left half your heart there. Kadyn must have said 5 times on our way here how much she misses her brother and daddy. That part never gets easier.

I know God has a plan for Kadyn and works through her in many ways. But, there is truly no way to comprehend the suffering she endures. We are relying heavily on our faith, as always, to see us through this roadblock.

Surgery is scheduled for 8:30 tomorrow morning. I will update when I can. Thank you for all the love, prayers, and continuous support. We love you all and appreciate you more than I could ever express. 

February 13, 2014

CF Clinic today...
Kadyn absolutely loves her doctor and CF team which makes what can be a pretty anxious day a lot easier. Her appointment went ok. The plan for now is for Kadyn to stay on the antibiotic a bit longer and keep treatments at 4 a day until she is back to baseline or her culture comes back (3-5 days) and a new plan is needed. As always, praying for a clear culture. 

Today, Kadyn asked me to take a picture of her getting her throat culture. The thought of it always makes her nervous, but when it's done she is so proud that it no longer makes her cry. 

February 6, 2014

Kadyn started with a few dry coughs over a week ago that have continued to progress. No cold or congestion...just a cough. Upped her treatments to 4 a day on Friday (Vest + meds 2x a day and IPV + meds 2x). Started a strong antibiotic on Monday but haven't seen much improvement. Now, adding manual CPT after each treatment. We are doing everything we can and will continue to do so while praying she can kick whatever this may be. Kadyn has been so compliant and willing to do everything asked of her. She has gone through so much and is still consistently positive. Again, I am in awe of her. 

I hate CF!

When we raise money for Cystic Fibrosis we may do so under the name of Kadyn's Krew, but we are raising money and awareness for every single person impacted by this disease. We realized early on that sharing Kadyn's story was one of the best ways to educate people about CF and raise awareness. 

Unfortunately, Cystic Fibrosis has never lain dormant in Kadyn. She has been fighting for her life since the day she was born. CF has never taken a day off. It has invaded and tried to take over her little body too many times to count in her short 4 1/2 years. 

I HATE CYSTIC FIBROSIS! I hate that its primary purpose is to shut down my spunky, brown-eyed, scraggly haired, smiley, baby girl. 

We fight CF every second of every day. We pound, shake, blow, neb, inhale, exhale every possible thing we can to rid Kadyn's body of the sticky mucus CF creates. We raise awareness and funds so that one day a cure will be found, and instead of worrying about dirt, water, germs, coughs, doctor appointments, hospital visits, bacterias, planning treatments, packing in calories, scheduling our day in 4 hour increments, downing dozens of pills, Kadyn will only have to think about playing with her brother/cousins/friends, birthday parties, swimming pools, jumping in lakes, riding bikes and playing as long and as hard as she wants until bedtime. No more pills, treatments, clean outs, hospitals, NG tubes and IVs. 

We need a cure for Cystic Fibrosis so one day Kadyn and so many others can stop fighting and just enjoy living their lives.

November 9, 2013

"You are my Sunshine, my only Sunshine 
You make me happy when skies are grey  
You'll never know dear, how much I LOVE YOU!"

So happy!! Kadyn isn't feeling great quite yet, but things seem to be moving in the right direction.  She was so excited to see Koy today that she couldn't stop hugging him.  This was much to Koy's (fake) dismay.

November 8, 2013

Kadyn ate a little and perked up a bit throughout the day. Still very tired and coughing like crazy. Her doctor told us today that Kadyn has parainfluenza virus. It's a very common virus but can cause major problems for people with CF. It basically acts like a match to gasoline to any bad bacteria in Kadyn's lungs causing it to flare up and try to take over. Luckily, we caught it early. We will be here no less than 5 days. If she improves and doesn't culture anything new, she might be able to go home on oral antibiotics after one week instead of two. 
Things got a bit rough for me tonight when Kadyn started asking some hard questions..."Why am I always sick? Why do my germ bugs make me go to the hospital? Mommy, it's just not fair!" Having no idea what to say I simply told her you're right and life isn't fair but this is our life...Before I could say much more Kadyn chimed in with "You're right mommy and I like my life." End of conversation...thank you God!

November 3, 2013

And so it is...Sweet girl woke up sick yesterday.  High fever and very tired.  Today has been the same with some added congestion and a couple coughs/  Praying it stays high and out of her lungs.  Sweet Koy is feeling better, but still a bit warm and laying low today.

November 1, 2013

So Koy is sick with a fever and  nasty cough.  I am trying not to worry and praying so hard that Kadyn does not get it.  Looking for words of comfort and found this on my fridge.  Forgot it was there...perfect for today. God is good.

September 13, 2013

Tests are done, the tube is out and we are excited to be heading home at last!!!

September 12, 2013

September 10, 2013

Tomorrow, Kadyn will have a CT scan of her sinuses and lungs. She will also get to practice PFT's. Pulmonary function tests (PFTs) are noninvasive diagnostic tests that provide feedback about the function of the lungs. People with CF usually start this test when they are 5, but Kadyn's doctors feel it would be a good idea to start practicing. Thursday, they will test Kadyn for reflux. This test requires a smaller version of the dreaded NG tube to be inserted in Kadyn's nose down to her stomach and left for 24 hours. She will have to eat while the tube is in for the test to work accurately. As we know, this is what Kadyn "hates the most". We are not sure she will talk, let alone eat, in that 24 hours. But, if there is a possibility that she has reflux and is aspirating into her lungs we really need to know so we can start treating it. Please pray for comfort and ease during the next few days. If all goes well, the plan is to go home on Friday!

Again, we continue to be overwhelmed with the support, prayers and love we have received. God and our Krew are what get us through these particularly hard times.

We love and appreciate you all so much!

Here we are again...

It has been very difficult for me to write this update. I've tried and failed several times. For one, it is hard to believe Kadyn is back in the hospital and we are going to be here at least two weeks. Another reason is when I write things down they set in a little harder and become more of a reality. I truly cannot remember the last time I thought Kadyn felt 100%. We got home from the hospital in May and have been on a roller coaster ever since. An antibiotics 6 out of 13 weeks roller coaster. Thankfully, it is summer and we have been able to distract ourselves and have a lot of fun! There were lots of laughs and smiles, but as a mom there was constant worry. I decided to push back the "what if's" and let Kadyn play as hard and long as she physically could. I knew that when it was too much for her she would rest. I knew that when those rest times became more frequent I would have my answer and it would be time for intervention.

Once I finally saw the exhaustion take over playtime, my heart sank. We had so many fun things coming up and I couldn't believe that this disgusting, bully of a disease was going to ruin them for Kadyn (and Koy). Luckily, Koy and Kadyn were able to go to their first day of "tutoring" with Ms. Abby and attend their first day of preschool. However, we missed Labor Day weekend at the lake with close and extended family and will miss a trip to the beach. Since we really don't know when Kadyn will be cleared to go home... Heartbroken, we postponed our family trip to Florida planned to start September 7th. I haven't had the heart to tell her, and when she says things like "after Columbia we are going to be so much closer to going to the beach! I will really need to burn some energy. I am SO excited!" my heart breaks a little more.

These things may seem insignificant to some people, but to a 4 year old they mean everything.

Cystic Fibrosis is a devastating disease. It does not care how old you are or what you have planned. It knows that even the strongest most positive spirits do not stand a chance against it.

Anyone who saw Kadyn this summer probably had no idea there was a war raging inside her little body. How could they? Seeing her incredibly large smile or hearing her contagious belly laugh, you'd never know every breath was a struggle.

We know we are dealing with a couple of components. Kadyn's compressed airway does not allow much more than air to move through. When you have CF and your mucus is extremely thick this is a very big problem. We have added a new treatment (in addition to her nebulizers and vest) called IPV. This seems to be helping already. So far, Kadyn is not culturing any new bacterias. However, she recently cultured, and has been on treatment for, a bacteria that could have caused the excess amount of mucus in her airways and lungs. Once Kadyn's cough is better they would like to get a CT scan of her sinuses and lungs. They may also test for reflux to make sure she is not aspirating into her lungs.

Right now, I am sitting here watching Kadyn sleep. I cannot believe she has endured so much this year. There is no way to get through any of this without a strong faith. Mostly, because there is no way to understand why such a little princess would have to fight like such a warrior on a daily basis. But, she does! Kadyn wakes up smiling EVERYday. She does exactly what she is supposed to do and she does it all like a true champion. We are all in constant awe of her strength, maturity, positive spirit, sense of humor, and grace.

Your continued prayers, love, and support also keep us going. We are going to fight and will not give up until we win...thank you for fighting with us!
We love and appreciate you all so much!

Great Strides 2013

The Springfield Great Strides Walk will be held this year on October 5th at Rutledge-Wilson Farm Park.  If you can't make it to the Kickoff, but would like to register for the walk, please go to www.cff/org/great_strides/katiecarroll.  Even if you have signed up in years past, please do so again so we'll know who we can expect to be joining us.  

Please remember that for the walk this year we are wearing last year's Kadyn's Krew t-shirts.  If you don't have last year's shirt, please email us your size at kadynskrew@gmail.com and we will have a shirt waiting for you at the walk.  

Thank you for being a part of Kadyn's Krew and for caring enough to stand beside us, to walk with us, and to help us fight this fight for Kadyn and all those who struggle with CF.  We hope to see you at the Great Strides Walk on October 5th!

August Update

Kadyn had CF Clinic last Wednesday and it went well. However, on Friday she began coughing and has been very tired. We got the call today that she is culturing a new bacteria called Stenotrophomonas maltophilia. We don't know much about it, but we've upped treatments and started oral antibiotics. Now, we pray they do the trick. Our hearts are heavy and we so wish Kadyn could catch a break. This picture was taken today. As you can see Kadyn is still smiling...so we are taking her lead (as usual). Things will get better!

"Do not let your hearts be troubled and do not be afraid" -John 14:27

Please click here to see  Kadyn's Interview

Thank you Claire for all you do for Kadyn's Krew. You have raised so much awareness for Cystic Fibrosis. We feel extremely blessed to have you fighting this fight with us!  We will see CF stand for Cure Found!!!

Update

Update:

I apologize I have not done a very good job updating lately. Mostly, because there has not been much to report.

Kadyn -
As always, Kadyn keeps a smile on her face through it all. She wears her princess dresses with headbands and a positive attitude everyday! She started having some retracting and labored breathing (again) a couple days ago. This makes her pretty tired... instead of running 10 races in the room she runs 2, instead of dancing to 3 songs in a row 1 seems to tire her out. Not sure what this is all about but we are keeping our eye on it.

Kadyn's culture -
She cultured human metapneumovirus this is a virus very similar to RSV. Finding a virus is actually a good thing because we know the reason she got so sick so fast.
Kadyn is not culturing any new bacteria (just her normal staph A). This is wonderful news!

Treatment -
Still on IV antibiotics, breathing and vest treatments 4x/day, and
due to the compressed bronchial tube (airway) we added a new treatment called Ez Pap. We stop her vest 3 times (every 10 min). Then, Kadyn blows against air resistance 10 times and coughs against air resistance a few times.
This is to help open the compressed airway so mucus can move up and out. We will be doing this at home too.

X-ray -
Kadyn had an x-ray today. We have not talked to Kadyn's doctor about it yet. However, the report didn't show much change from a week ago. It also stated mild to moderate hyperinflation...I believe this just means she still has trapped air in her lungs. But, we will know more what it "really means" when we hear from the dr.

Home?
Praying for soon!!!!!

We really miss being together as a family. For some reason this stay has been harder on me than the last few. I don't know if it's the fact that we have been in the hospital 42 days in 4.5 months, that my little girl is 4 and continues to endure so much discomfort and pain on a daily basis and I cannot help her, or because I am actually seeing how devastating Cystic Fibrosis can be.
After writing this, I think it's safe to say it's probably the combination...

I've said it many times before... God gave Kadyn a little extra "something" when He made her. Her spirit and smile are contagious. You cannot help to laugh or at least smile when she is around. She knows no other way to live and she makes the most out of every single second.

We feel so blessed to have such incredible prayer and support warriors in our Krew. Thank you and we love you all!


And we know that in all things God works for the good of those who love him, who have been called according to his purpose. - Romans 8:28

And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. - Philippians 4:7

X-ray

Kadyn's x-ray showed some decrease in secretions, but also more trapped air than before.  They have decided a bronchoscopy is necessary to get a better idea of what is going on.  This will also give us a better culture of the bacteria(s) growing in her lungs. 

Of course this feels like a punch in the stomach because it is the reality of CF rearing it's nasty head and waging war inside our sweet girl once again.  But, in a way, it also a relief that her doctor will get to really see what it looks like in there.  

The bronch will be on Friday and she will be sedated for the procedure. As always, prayers and positive thoughts are greatly appreciated!

WE LOVE YOU!

Now faith is being sure of what we hope for and certain of what we do not see.    
Hebrews 11:1

God is good all the time.

Columbia...again

April, 29, 2013

Kadyn is staying true to form...

We expected to see a significant improvement from the IV antibiotics by now. That is not the case. Kadyn still has a lot of crackles in her chest, labored breathing, and low oxygen levels.

We are continuing this course of action and will reassess on Wed. with an X-ray. If it shows no improvement or she has gotten worse, then they will do a bronchoscopy on Friday. This will allow the doctors to see into her lungs and take a better sample of what might be growing. It will also give them the chance to flush some saline deep in the airways to help break up any mucus plugs that may be stuck.

I feel like a semi-expert on CF belly issues, but pretty lost when it comes to the lungs. We haven't had any issues in this area since 2011. Therefore, we will wait for the doctors to tell us what comes next. As always we appreciate your support and prayers. We love you!

We live by faith, not by sight.

- 2 Corinthians 5:7

Pray continually.

-     1Thessalonians 5:17

April 25, 2013

Fantasy to reality...

Yesterday, we found out Kadyn's x-ray showed a lot more mucus in her lungs. It was decided that she needed to be admitted today for 1-2 weeks of IV antibiotics. We just got checked in and she will be going down to get a PICC line any min. Kadyn did not do too well with anesthesia last time. I am asking for prayers that she wakes up smoothly with no problems. Also, that the PICC is placed easily and stays strong as long as we need it. Thank you Kadyn’s Krew. We love you ❤

Results

I just finished talking with the Dr. DiLorenzo about the results from the motility study. Short version, there is no large bowel motility disorder. In comparison to the results from Kadyn’s first motility test in (Dec. 2012) there were signs of improvement. This is most likely because the cecostomy tube is doing its job and letting the bowel rest, in turn, becoming less dilated. When they gave Kadyn a stimulant to challenge her bowel contractions it showed to really help. The doctor’s recommendations were for us to lower the volume of go-lytely, but add the stimulant to each cecostomy flush. She will also discontinue the Miralax (for now) but continue the Amatiza pills increasing the dosage if necessary. We now know what to do to keep the large bowel clear. However, Dr. DiLorenzo did say she could fill up again because she may still have problems in her small bowel. There is no good way to test small bowel motility and CFers are prone to small bowel disorders like DIOS (which Kadyn has). This is good news because there is a way to keep Kadyn’s bowel clear without surgery. But, I would be lying if I said I was not frustrated. I want a fix for Kadyn and we are not leaving here with a clear solution. Bottom line…CF is causing these problems and that reality is a very very hard thing for me to hear.

Columbus

A Day of Blessings

I am not a person who likes change. The thought of a new city/ hospital/ doctor was a bit overwhelming. As always, God had us covered.  Mom, Koy, Kadyn, and I got into the car this morning headed to the hospital and took a wrong turn onto a highway. This is usually a good indicator of how ones day will go...  Not today! The wrong turn led us right to Nationwide Children's Hospital.

The hospital is incredible! Extremely clean, open,  bright colors, nice/helpful staff, and very easy to navigate.

After talking with the Nurse Practitioner we not only found she was a retired CF nurse, but also Kadyn's new doctor has a son living with Cystic Fibrosis.  We prayed that God would lead us to a place where the doctors would take everything (CF and GI) into consideration....answered prayer!

We were told that depending on the KUB Kadyn might need an NG tube after all.  She, of course, heard this and her anxiety skyrocketed.  Results were ok and orders were given to clean her out through her cecostomy instead of NG tube...another answered prayer!

Tomorrow Kadyn will have 6-8 hours of testing.  They are going to take her button out and insert a motility catheter.  She will be asleep for the change, but when she wakes up she will be extremely anxious and scared because of past experiences with her button.  I am not only asking for prayers for answers but also peace and comfort for Kadyn.  She is a tough incredible little girl who has been through so much.  I am constantly in awe of her resilience and tenacious spirit.

We will get results on Wednesday and I will continue to update as much as I can.  Thank you for all of the continued prayers and support.  We love you all very much!