Well, it would not be a trial if we did not have a big road block. The pathologist looked at the heart tissue that was taken after Kaidence's surgery. They have found some questioning things. Kaidence has Glycogen in her heart tissue. This could be nothing or it could mean that Kaidence has a serious disorder that could affect a new heart (so they would not transplant her) or she could have a muscular disorder that would cause her muscle tissue to waste away, eventually causing death. Or she could have something that could possibly be treated. They tell us not to get too worked up over it but that is a little hard when this can totally change our future. Please continue to pray for us as well as the doctors if you don't mind
Homiecoming and trunk or treat
3 days ago
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6 comments:
Shauntelle, you probably don't know me. (Grandma Lois does) I'm one of your cousins, married to Karl's son, Randy. I have been following your blog since Aunt Melba shared it with me a few days ago. I just wanted to let you know that there are some of us who can relate to what you are going through. Our thoughts and prayers are with you during your difficult decisions. Randy and I lost our little Scotty in June. He was 18 years old, and was never suppose to live to be 2. He defied all the odds, and baffled all the Drs. He had a Glycogen storage disease, and restrictive cardiomyopathy, along with a whole list of other life threatening illnesses. I tell you this, because only the Lord knows what is best for our little ones. They can overcome medical challenges that even the best doctors don't think possible, if it is the Lord's will. Listen to your motherly instincts, and you will know what's best for Kaidence. It's okay to question the doctors and tell them your feelings and concerns. They will respect you for it. We spent a great deal of time right there in the PICU where you are (room 24 became Scotty's room)and got to know the PICU drs and nurses quite well. They do want what is best for our little ones. When you get overwhelmed sitting there, go upstairs to the "quiet" room (can't remember what they call it), and pour your heart out to the Lord. He'll listen.
The hospital also offers a CarePage service...I don't know if you're interested since you have the blog, but it's a great way to keep in touch, and give daily reports.
Our prayers are with you.
Love, Emma
Shauntelle,
When will the Dr.'s know more about what is going on with that last test? It seems like those results were so broad. Are they working on narrowing things down for you?
You are definitely in our thoughts. Remember how loved you all are!
Melissa - Intermountain Healing Hearts
We are continuing to pray for your well-being and especially that our Father in Heaven will continue to be with you and sweet Kaidence. We love you and are continually thinking of you and praying for you. Keep your spirits up and know that we love you.
Mark and Leslie Hansen and boys
Shauntelle, we have followed your blog faithfully to check on the progress of your sweet little girl. I check it the minute I get home from work. You have been such a source of inspiration for so many people and a force for good in their lives. Miracles happen - I was one of them. I was supposed to have been severely brain damaged and only had 1 chance in 3 to live as a baby. I know Heavenly Father is mindful of us and performs miracles. Keep your faith. We will continue to pray for you always. All our love - The Farnes
I've been praying for Kaidence, and I'll continue to pray for her as well as the rest of your family. I am sure you are exhausted. Love, Djinni
I found your blog through the Carters and have a 2 month old heart baby. We are praying for little Kaidence, your family and the doctors during this difficult time. I know that Heavenly Father and his angels are watching down on you during this difficult time. I know he will guide all. All our prayers and love.
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