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!

UPCOMING KADYN'S KREW EVENTS

Kadyn's Krew Events

We are so humbled by all the support and love.  Kadyn's Krew, you are remarkable!  By raising awareness for Cystic Fibrosis, you are getting us one step closer to making CF stand for CURE FOUND. We love you all so very much!


April 18 

WCR of Springfield Charity Auction - Proceeds to benefit WIN and Cystic Fibrosis/Kadyn's Krew

Here is just a sampling of some of the amazing packages that will be up for auction on the 18th!
* Millwood Golf Pkg with a former PGA Pro!
* 2ND AMENDMENT SHOOTOUT with Mike Green
* 2 Night Condo Stay at Indian Point!
* Dance Classes
* Camping pkg., Branson Shows, Spa Day, Professional Home Photo Shoot, Professional Electical Service, Springfield Cardinals tickets & merchandise, and we’ve heard rumors of …something about…. a First Pitch possibly!

April 24

Male Beauty Pageant at Glendale High School - Proceeds benefiting Cystic Fibrosis/Kadyn's Krew

Kadyn's Krew Night at Slim's Chicken
From 4:00-10:00 Slim's on JOYCE in Fayetteville, AR

May 2

Riffraff in Fayetteville, AR will be donating 20% of all sales from 6:00-8:00 on May 2 to Kadyns Krew 
**** Springfield friends, you can buy online at www.shopriffraff.com * Just make sure to put Kadyns Krew in the notes!

May 4

Great Strides walk in Fayetteville, AR
Very Big THANK YOU to Claire Turner for organizing this and all other Fayetteville events.

May 5 

Benefit Bass Tournament  - Table Rock Lake, Baxter Launch Ramp - Proceeds benefiting Cystic Fibrosis/Kadyn's Krew
Very Big THANK YOU to the Sponsors of this event - 
SRC Holding Corp
Marisol International
Davis Lynn and Moots CPA’s
Fabick Cat
WorldWide Logistics
Application and Rules may be printed here.  

***As always,  100% of all money donated to Kadyn's Krew goes directly to the Cystic Fibrosis Foundation***