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!!

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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.