Wednesday, October 24, 2012

I can’t believe it’s been nearly 4 months since I’ve posted an update!
Rest assured, no news is good news… Well for the most part.
Kate has had a few small bumps in the road but thankfully nothing too serious.

Let me back track just a bit so I can fill you in on the last few months.

We started slowly catching up Kate’s vaccines. She will never be able to receive the live ones, but it’s nice to know she’s finally protected from some scary things!
Then mid- August, while changing her diaper one morning I noticed a spot on her bottom, kind of looked like a pimple. We took her to Children’s here in Dallas and they diagnosed her with a perianal abscess (ouch!) and gave her some oral antibiotics. She was not tolerating the medicine, it was making her extremely nauseous and she was in such pain from the abscess, we were worried she wasn’t keeping enough of the meds down to help her abscess heal. We called our transplant team and packed up to head for Houston. Andrew unfortunately had to stay in town to work, so Kate, Braden, my mom and I left for what we thought would be a 3 day trip. We ended up having to stay for 3 weeks! Her ANC (which is the number of specific white cells that fight bacterial infections) were so low, even with super strong antibiotics the stubborn abscess just would not heal.
Kate began seeing a team of hematologists with hopes they could find out why her ANC was so low. Normal people have an ANC into the thousands, our special girl had an ANC of… Zero. On a good day, it would go up to 40. Not good. They performed a bone marrow biopsy to rule out certain things, some being specific cancers that attack the bone marrow. Talk about a long few days of waiting for results. Thank God, she is cancer free. They found immature neutrophils (those specific cells), but for some reason that is still unknown, they aren’t being released into the blood. The drs discuss starting Kate on daily injections of a hormone to stimulate her bone marrow to produce neutrophils, called GCSF. They give her a blood transfusion to give her body a boost, her hemoglobin is always a bit low, but dips down even more when she’s not well. This transfusion gives her ANC a little boost as well and her abscess finally heals.
We get home just in time to start Braden in school right on time. And mommy has homework… Find a home health care company in our area that can come out and teach me how to give Kate these injections đŸ˜¦

Fast forward, oh about A WEEK, after getting home from Houston and Kate is up to her shenanigans again. She wakes up one morning with these painful red nodules on her feet, two on each one. We watch them for the day thinking maybe they are ant bites, but that night she spikes a fever. We are headed to Children’s in Dallas again! They drop some pretty scary potential diagnosis here and there… Septic emboli and an infection around her precious heart being the two that top the list. Luckily her fever drops and she is diagnosed with a virus. We are able to come home 5 days later and her feet finally heal. While we were in the hospital, she was started on her GCSF injections. She is now receiving those every day and although they are not fun, she’s a tough cookie! It’s harder on me than her!

Kate went for her biopsy and check up at the beginning of this month. Everything looks GREAT!! Her heart is strong and healthy! Thank you God, and thank you donor family!

We are so blessed! Although these last few months have landed us in and out of the hospital several times and up to our ears in stress and worry, we are so very thankful these were just tiny issues and we have our precious gift from God bringing so much joy into our home.

Like always we ask you to continue to keep Kate in your thoughts and prayers. Thank you all!

Still happy as can be in the hospital. Houston 08/2012


She likes to do everything the nurses do!


We took lots and lots and lots of trips around the cardiac floor in this car, it helped us both stay sane. And Daddy, being the most wonderful daddy that he is, had a car just like this waiting on her when we got home đŸ™‚


Posing with her bear that her sweet dr. brought her in Dallas. 09/2012


She loved sitting by Ronald! She really will be in love when she realizes he’s the Happy Meal Guy! This was taken at Ronald McDonald House in Houston 10/2012


Finally able to get out of the house and do some normal kid stuff! Picking out pumpkins with Bubba’s help.


What other kid do you know that runs around the house hugging a Lysol can? She’s on germ patrol!


Looking too grown up!


And in case anyone was wondering, spaghetti goes on your head, not in your mouth!



About katelynsmarathon

Our blog follows the journey of our sweet baby girl, Katelyn Mae. She was born April 14, 2011. At 5 weeks old she was diagnosed with dilated cardiomyopathy (DCM) and we were informed she would need a heart transplant. We were transferred to Texas Children's Hospital in Houston, TX. On Sunday, July 3rd we received the life changing call that a heart was available for our princess. Katelyn is absolutely thriving with her new heart and we are eternally thankful for the miracle workers we call her doctors, and the donor family that gave the gift of life to our Kate.
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4 Responses to Wednesday, October 24, 2012

  1. Deborah Childress says:

    Gosh, what a summer! I am so glad all is well now. I pray that Kate’s immune system will be the strongest the doctors have seen in a long time. Jesus, thank you for keeping Kate in the palm of your hand. Amen. God bless you all, Debbie Sent from my iPhone

  2. Janet says:

    God is good and if no news is good news…hope we don’t hear from you until Kate hits fun milestones…starting school….graduation….wedding….:) Prayers continue always!

  3. valerie melton says:

    so thankful for the good news, on katelyn , i am a avid follower and prayer warrior since the beginning , i will continues to pray for you little angel . she truly is a gift for God. thanks for all the updates,

  4. Sherry Allison says:

    I was so excited to get this update and see those precious pictures of your beautiful angel. Thoughts and prayers are with you all always. So glad Mary was able to go with you to Houston. Can’t wait to see what God has in store for Katelyn’s future, because it will no doubt be something really special. Thank you for the update and, so sad that she had to endure such pain, but glad my reading took me to a wonderful ending. She’s such a doll. God be with you all. Sherry Allison

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