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***

Friday

Thought day 23 might be THE day...Liver enzymes are way down, but Kadyn's x-ray showed little to no improvement. As always trusting in God's plan and in His timing. I know we will be home when He feels she is physically ready. Until then, we are making up lots of new games to play within our four walls🏥 So thankful for our visitors and constant support from friends and family everywhere. Love you all!

Here are some pics from Valentine's Day. Ryan and Koy came and Aunt KyKy made a surprise visit! So fun and extremely blessed!!!

Day 21....

We have now been in the hospital the same number of days Kadyn was in the hospital from Oct. 2011-Oct. 2012.  Positively thinking...We could just be getting it all out of the way the first few months so we can enjoy the rest of the year at home!

Today we are just hanging out.  No x-rays or labs at all today.  Kadyn's CF doctor is not doing hospital rounds this week. The doctor taking his place is the CF Infectious Disease doctor.  Laughing, he told Kadyn this morning "I like listening to you talk and always have fun visiting with you".  He is very nice!  With that, he has taken her off the antibiotic she was on for the infection around her button.  It was the 7th day and he would like to see if it is going to flare up again.  If so, he wants to culture it and see if anything comes up.  He has also been going through all of her records and called her KC doc about her intestinal biopsies done in April.  Obviously, something about them caught his attention.  I decided to try Kadyn on a gluten free diet (again) to see if it will help with the distention of her belly and retention of stool.   I got all of her favorites at the store, so she is very happy about the change.

In the meantime, we wait for our next step.  I am hoping they will draw labs tomorrow because I am curious to see if her liver enzymes have stayed down.  If so, maybe we can think about heading home!?!  Besides the acceptance letter we have not heard from Columbus yet so we are waiting on that as well.  All in God's time....I have to remind myself of that quite often these days.

We love you all and appreciate your love, support, and prayers more than ever!

Jeremiah 29:11-13: “‘For I know the plans I have for you,’ declares the LORD, ‘plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.’”

Monday Update

Over the weekend Kadyn's liver enzymes increased again and her x-ray showed she was very full.  Her cecostomy tube is doing it's job, but her upper (small bowel) is not.  On Saturday, we put her back on a clear liquid diet and as you can imagine she was NOT pleased.  Not only the liquid diet but 12 caps of Miralax and a new "helper" medicine called Amatiza.  She was not able to take Amatiza before because she couldn't swallow pills. No longer a problem for this warrior! We were doing everything in our power to avoid another NG tube.

IT WORKED! The x-ray on Sunday showed that she was clear.  It also showed that her insides were very very distended (not sure why). We got Kadyn's labs back and her liver enzymes increased...AGAIN (also not sure why).  Kadyn was able to start back on the soft mechanical diet along with a daily regimen of: 12-15 caps of Miralax, 1 Amatiza pill, 1000ml go-lytely via cecostomy tube. She was so happy about the food she was willing (as usual) to do whatever else was necessary.  It is amazing to me that Kadyn does not talk much about going home.  She knows we are here until she feels better.  However, you take her food away and she is screaming to go home from the rooftops.  I don't blame her one bit!

MONDAY...

Great start to the week! Liver enzymes DECREASED over night...PRAISE God!! Her x-ray showed normal patterns and her distention has lessened.  We will continue what we are doing and have an another x-ray tomorrow.  They are going to hold off on labs tomorrow and test her again on Wednesday.

All in all, this is the most positive news we have received in awhile.  Prayers are definitely working!!!
Still no word from Ohio on when they want to see her.  We are all hoping to get a call and date this week.

Thank you everyone! You are keeping us strong and we continually feel the love! Please keep up the prayers.  God is good ALL the time and they are definitely working!!!!

"Do not grow weary and lose heart" Hebrews 12:3

"And whatever you ask in prayer, you will receive, if you have faith.” Matthew 21:22


Here are some pictures from the weekend...Koy and Ryan got here right when Megz left so it was fun  filled!! Gamma gets here today and you would think it's been a month since Kadyn has seen her. She is about to burst with excitement! Our family and friends are simply incredible! There is no possible way we could do this without each and every one of you doing what you do! We love you all!!

Friday - GOOD NEWS DAY

"

Good News! Yesterday, we got an "acceptance" letter to Nationwide Children's Hospital in Columbus, Ohio. This means that Kadyn will be seen by a motility expert! We have been praying for something like this for a very long time! We do not have a date yet, but they said they will be contacting us very soon.

From good news to today' s news...
Kadyn had labs and an x-ray this morning. Her liver enzymes have increased again and her x-ray showed that she is very very full again. She is back on a liquid diet and we are going to do everything we can (12-15 caps of Miralax daily) to avoid another NG tube. There is no real explanation for any of this, or none that we can find so far. It is like her stomach and intestines have just stopped working all together. I thought we might be coming home this weekend, but it doesn't look like that anymore.

We continue to trust in God and give thanks that Kadyn's spirit has remained positive and strong. She is happy and doing her best to understand all we have to do to get her healthy. I say it all the time but I swear God gave her some of the most amazing gifts when He made her. Kadyn teaches us something new everyday. I am so proud of her and feel incredibly blessed that God chose me to be her mommy.

I have to thank all of you as well! The cards, calls, texts, balloons, flowers, gifts, prayers and love are so appreciated! We love you and know we could not do what we do without all of you standing with us and cheering us on! THANK YOU!!

"

Updates from Wednesday and Thursday

Wednesday...

Found out yesterday that the pain in her button is from an infection in the abdominal wall at the button site. Started oral antibiotics. 
Kadyn's liver enzymes started going back up yesterday and increased more today. We will continue to monitor those as well. 

Thursday...

I'd say today is one our best days yet! Enzymes are still going up but not by much so they are not too worried about that. Hopefully the antibiotic will continue to do its thing on the infection so we can get back on her regular clean out schedule soon. They overnighted all Kadyn's latest records to Columbus and her doc is calling the specialist today so they will have the most current info when they review her case on Friday.

Gamma and Koy just left and Kadyn is sleeping peacefully. So sad they are gone, but very glad both will be able to be home for a bit. Megz is coming to see us tomorrow, then Koy and Ryan will be back on Saturday.

So thankful, for the incredible love and support we have felt this entire time. Still trusting in God and His plan. Love you all!

Monday

Sorry for the lack of updates, but there really hasn't been anything new to report. Kadyn has been very bloated and experiencing a lot of pain, mainly on her right side and around her cecostomy button. We started her home bowel regimen yesterday. This includes, 2 go-lytely cecostomy clean outs and 6-9 caps of Miralax orally each day. She had her x-ray this morning. It showed that the cecostomy is doing it's job as usual, but she is starting to hold stool on her right side above the cecostomy tube (this is why we were here in the first place). So, we decided to go to our max 9 caps of Miralax daily to see if it can move it along. She was in so much pain this morning she was in tears. We are so confused because she is hardly ever in pain at home (more of a discomfort when full rather than pain) and we cannot figure out where the pain is coming from. 
Kadyn needs at least one full day of minimal to no pain before we can come home. So, we just are hanging tight. Today, we are focusing on all the positives: liver enzymes are still coming down, no NG tubes, Kadyn is able to eat some food, no IVs right now, we are back down to 2 breathing/vest treatments a day, Gamma and Koy are here, I get to spend time with my babes without having to look at laundry or dirty dishes :) We would rather be home but we don't have that option yet, so we will take full advantage of the quality time we get to spend with each other.

Again, we thank you for the incredible amount of support you continue to show us! We are so blessed to have such an amazing krew of family and friends. We feel your prayers and have never felt alone on this journey...we have all of you to thank for that!

"I will hope continually, and will praise you more and more." Psalm 71:14

"We do not know what to do, but our eyes are on you." 2 Chronicles 20:12b

Saturday

Another family filled day today! Kadyn had a pretty good day overall. She loved playing with her best friends Koy and Harlow and was over the moon that she was able to hang with Meme, cuddle with Uncle and laugh with Uncle Neil. Kadyn's liver enzyme levels continue to decrease and she is getting a bit stronger everyday.  I am not sure we will see total relief for her belly pain and other symptoms until we are able to get somewhere that will know how to "fix" her.  Her doctors are definitely working to get her to the right place as quickly as possible.  I am starting to see the light at the end of this tunnel (fingers crossed). Unfortunately, Kadyn will not be leaving Columbia feeling better than she did when she came.  This makes me incredibly sad.  I have always been honest with Kadyn, no matter what. She knows more than most kids should at 3 1/2, but it also prepares her for her circumstances.  I told her I would never lie to her about what doctors are doing/going to do, why we do it, if it will hurt or not, etc. She always says thank you to the doctors and nurses when they finish doing whatever they need to do with her.  We made this a habit early on because we want Kadyn to understand that even if it hurt her, ultimately, they are the ones who make her feel better.  Coming in for a routine clean out and staying for....whatever it is that we are still here for? I feel like I have let her down and in some ways broke my promise.  She is still in a lot of pain and I don't know how or when she will feel better.  

I guess I am beginning to realize some of the harder life lessons that come along with having a chronically ill child.  

Update

All virus and toxicity panels came back negative. They are going to repeat the ultrasound and KUB this morning to see if anything has changed. They really have no idea why her liver enzymes are still so high. Her dr will be talking to other specialists as well. He is treating the belly and liver as 2 separate things until they can find something to link them. She is now on clear liquids only bc her belly is causing her so much pain and he is afraid she could fill up again. Still no mention of going home.

Update

Last night we noticed Kadyn's belly starting to swell a bit and some odd lumps appear.  She woke saying that her belly hurt this morning. The pain and lumps continued to progress throughout the day.  They took her down for a couple x-rays tonight that really did not show much. We are praying that we get some test results and maybe some possible answers tomorrow.  The outpouring of love and support is incredible.  

Kadyn is such a force and continues to do everything she can to keep a smile on her face.  She is so strong and has endured so much.  This evening, Kadyn needed to go potty so I walked her in and sat her down. She asked for privacy, which is hilarious at this point considering the past few days, but I left the bathroom.  I went back in a few minutes later and saw that she had tears in her eyes.  I asked her what was wrong and she said "sometimes it just hurts so bad mama". At that point, I realized she obviously did not need privacy for the same reasons we would. Kadyn didn't want me to see her cry. What 3 1/2 year old does not let their mommy see them cry???!! She wants so badly to be all better that she is hiding her tears.  I hugged her for a very long time after that and while we were hugging I felt her little body relax a bit.  What a load my sweet girl is carrying.  

Please continue to pray for answers and healing. But, tonight I would also like for you to pray for understanding and peace for Kadyn.  She is wise beyond her years and her little mind is working overtime.  I pray for her thoughts to be light and childlike and without burden tomorrow.  Thank you again for the prayers, support, and love.  We love you all so much!

Kadyn's Hospital Recap with updates

Kadyn was admitted for a bowel clean out on the 24th. She started acting strange on the 26th. Yesterday she was sleepy and unresponsive most of the day. They ran some tests. Her glucose was extremely low. They fixed that but she still wasn't responding. They couldn't figure out why so they moved her to ICU Kadyn is in ICU now and stable. They ran lots of blood tests and have her hooked up to IV fluids- potassium and glucose. Her EKG came back normal. She opens her eyes occasionally but not for long. Basically she's wiped out and sleepy but comfortable. They found the source of the problem last night. Kadyn's liver enzymes are elevated. Normal for her (and where they were when we got here Thursday) is 30-50... hers are over 2000. They drew a bunch more blood and did an ultrasound of her liver. Will know more when those results are back. She slept all night. Took blood at 3:30 and she went back to sleep. Potassium is still too low. Liver enzymes showed they are very slowly coming down. So that is good. Still do
n't know a cause and may not until her virus panel comes back (maybe midweek). Until then, we will be here and trusting that God loves her and knows her plan. In the times that she "checks out" we envision Him holding her and shielding her from the battle going on in her little body. As always your prayers, support and love have been overwhelming. It give us so much comfort and we cannot thank you enough. Kadyn update January 29: She's back in a regular room and the NG tube is out so she's very happy about that and back to her talkative self. Her liver enzymes are still very elevated but slowly coming down so that is good. Still waiting on the virus panels to come back and continuing to do blood work. As she told her brother, " they did a hundred sticks on me!"...not quite that many but it probably seemed like it to her!! Still looking for possible toxins in her system that could have affected her liver. Potassium and glucose levels are back to normal. Swelling is down. Her tummy is sore but that could be from the steak and shake she requested for her first meal :). As you can see Kadyn's spirit has been unaffected...Thank you God!!! Thank you Kadyn's Krew and everyone who continues to lift her up in prayer. We love you all so much!

Thoughts After the Walk

I have been waiting for the words to come to me, so I would be able to convey what Saturday truly meant to us.  

Walk Goal: $80,000

Krew Total: $82,000 (now over $85,000 and counting!)

Walk Total:$106,000 (and counting)

Number Kadyn's Krew members counted at the walk 187!

A week later,  I am still waiting because there really are no words that will suffice.  Luckily, my mom is much better at putting her feelings on paper.  So, I will share her thoughts after the walk.

We are stunned and amazed by the incredible generosity of family, friends, and this community! We are certain there are no more generous hearts anywhere. 

It is impossible describe the feelings we had when we looked around at the Great Strides Walk last weekend and saw so many people gathered together because they have been touched by the reality of Cystic Fibrosis and the challenges that our granddaughter and so many others face each day. 

It is understandable, perhaps,  why a parent, grandparent, aunt or uncle of a child with CF would be passionate about dedicating time and resources to fighting this disease. They know personally, first hand, its devastation and cruelty because it affects someone they love. 

It is quite another thing to see friends, acquaintances, fellow workers and total strangers join us and rally in support of this cause. It’s difficult to comprehend this kind of generosity and compassion.

We met a pediatric resident during our last stay at KC Children’s Mercy who told us he is considering specializing in pediatric oncology.  When we asked why he would choose to work in a field with such critically ill children, he said it’s because they have such wisdom and have so much to teach us about living. 

Perhaps that’s why children like Kadyn with CF or other life threatening diseases pull on our heartstrings so forcefully and compel us to want to do something to add to their lives.  They have a way of teaching us how appreciate every moment and to live each day like it’s our “best day ever”. They make us grateful for the blessings of our healthy children, but they also make us realize the blessings of those who see the world through the eyes of ones who don’t take their days for granted. 

Thank you for caring enough to help us help them. 

Jack and Betsy

There are not enough thank you's in the world to express our gratitude.  Kadyn's Krew, we love and appreciate you all so much!

"This is the best day I've ever had!"

No doctors, no tubes, no shots, no IVs, just pampering.  "Kadyn's Day"  and what a day she had! I am still so overwhelmed by it that I find myself crying at the littlest things!

"Kadyn's Day" happened because our dear, sweet friend Somer (hairdresser at W3 Salon) wanted to do something for Kadyn and to raise money for CF.  Kadyn was scheduled for a princess up-do this morning; however, we were not prepared for the royal treatment she received! Walking up to the salon we saw a large banner full of Kadyn's pictures, inside was a princess haven. Pink balloons, Disney music, pink bake sale items, and her throne was decorated completely!   She was showered with pink princess  presents. For once in Kadyn's life she was speechless.  There is no way for us to explain how magical it was and how much we appreciate all of the love and work that went into making this day special for our princess.  She goes through a lot.  For her to have a day of nothing but princess fun is beyond words!  Somer, everyone at W3, and everyone else who took part in "Kadyn's Day", we thank you with every bit of our hearts.

We love you!

Home...Recap

When my mom, Koy, Kadyn, I went to KC on Sunday night we expected to be home Monday afternoon.  Apparently, God had other plans...

Kadyn and I were called back to Interventional Radiology at about 9:00 Monday morning.  We walked into a large Operating Room and immediately Kadyn was nervous.  I told the radiologists she had not had pain meds of any kind.  They assured me this was a routine procedure. The track in her stomach was well established, so they would pull the old tube and insert a new one...easy as that! Luckily, I was able to stay with her during the procedure and we watched the screen of her belly as they tried inserting, reinserting, removing, conferring, (repeating) for over an hour.  Kadyn had some choice words for the "radiologies", as she called them.  I just wish I could remember them. Finally, they told me they were going to have to take a CT Scan to figure out why the tube would not go back in.  This is where things started to speed up....

CT scan was taken
Radiologists showed me the scan and explained that there appeared to be a tear in the track and some leakage from her cecum into her system.  He explained that Kadyn would need be admitted, put on IV antibiotics and Infectious Disease would be in to see us. Another lady was there who told me the GI team was notified and we needed to go to admissions to get checked in, a room was ready for us.

Sitting in admissions, Kadyn began to be in a lot of pain.  We had to wait for over an hour for our room and during that time the pain continually increased.

Once in her room, teams of doctors came in asking me the same questions over and over again and evaluating Kadyn.  Each time someone looked at her stomach the bloating had increased and her coloring decreased.  Once I had finished talking to floor doctors, surgeons,  GI team, and Infectious Disease  doctors, the surgeons came back in and told me Kadyn was showing signs of infections. They would need to operate on her right away.

The surgeon explained they had to find the hole and repair it.  They would try to stay laparoscopically, but if they could not find the hole they would have to open her up to find and repair it.  She went into surgery and prayers went up!

So many people were lifting Kadyn up in prayer and we felt every single one of them.  We knew there was nothing we could do but pray and God was taking care of her.  In our eyes, a miracle happened.  They were able to stay laparoscopically, clear what they saw as leakage, and put a new button in her track so we could continue our home clean outs.  We really could not have received better news.

Kadyn got out of the hospital on Thursday evening.  I can't believe I am saying this, but she looks better than she has in months!  Koy and Kadyn caught up on their sleep in a hotel Thursday night. Kadyn is still cautious of her belly and her new button, but starting Friday she was running and playing like usual.

We believe in the power of prayer and that miracles do happen.  Our baby girl was sick and getting sicker by the minute.  God healed her and we have all of you who sent your positive thoughts and prayers to thank.  Thank you! Thank you! Thank you!

We love all of you very very much!