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.