Pray as Payton Waits for Transplant

$26,735 of $50,000 goal

Raised by 276 people in 65 months
Payton is 23 and was diagnosed with complex regional pain syndrome in 2011 after a simple volleyball injury.  We were able to get her into remission twice but this last time it caused her foot to contract and roll in and under.   In September of 2016 we made the decision to amputate her right leg below the knee.   Her foot was so badly contracted that she would never regain function.  In March of 2017 her knee then contracted and we thought we'd have go above her knee.  Luckily they were able to release all her hamstrings and revised the original amputation.  She is now using a prosthetic and her leg is doing great.   Her biggest battle is the gi failure.   She was diagnosed with sma syndrome in 2014.  She had a surgery to bypass her intestines and really everything went downhill quickly after surgery.  Her intestines never woke up.  She was placed on tpn in July and a feeding tube was placed in October.   She never could handle the feeds.  They go backwards and pour out her stomach.   After years of fighting for answers we were sent to Omaha.   We thought there they were going to help and list her for an intestinal transplant but she was denied.   We headed back home with no answers.  She was soon septic and fighting for her life once again.   University hospital wanted to send her home on hospice.   This was unacceptable to us.  She's not done fighting.  We scheduled an appointment in cleveland and left on April 23, 2017. Payton hasn't been home since.   I came home long enough to close my daycare and get our home ready to sell.   We were able to sell it quickly and kurt found us a 2 bedroom townhouse.   We needed to downsize in order to allow me to come to cleveland and stay with Payton fulltime.   I've been here since June 5th 2017.  We stayed at the Ronald McDonald house until December.  Once the committee agreed to list her for transplant we were able to look for longer term housing.  We found a month to month lease at a house and stayed there until March of this year.   We then signed a 12 month lease for an apartment as we'll be here much longer than we thought.  Payton has been listed for her transplant since January 23rd and we wait.   It's hard to be so far from home.  We have exhausted all insurance reimbursement and we're covering double living expenses on one income.   There is no end in sight.  She'll need to stay at least 6 months after transplant and we have no idea how long we'll wait for the call.   We appreciate every bit of help.   Gas to and from the hospital is expensive,  groceries,  utilities,  rent,  copays,  prescriptions,  etc.  It's a bit overwhelming and kurt works every overtime shift he can to keep us here.   Thanks to everyone who has supported our family since we started this page so many years ago.   We love you all and couldn't keep fighting without your help.
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Not the update I wanted. I'm in Colorado to visit and go to Kurt's uncles funeral yesterday. Payton had follow up cultures taken Friday. The coordinator called late last night letting her know that they were growing yeast. To say she's demoralized would be an understatement. She was direct admitted and they restarted iv antibiotics and an anti fungal. It's so unfair. She literally just finished antibiotics Wednesday for the staph and now she's fighting yeast. And to top it off I'm not there. I hate that she's dealing with this all alone. I'll update tomorrow after she sees infectious disease. The line was removed today and a temporary one is in her neck. One step forward, two steps back lately.
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Quick update. Payton had her follow up ct scan Monday and clinic today. The scan shows the nodules, which they believe are septic emboli, have almost resolved. Almost isn't perfect. Her iv antibiotics completed yesterday. She'll have another ct scan Monday to see what the spots are doing after stopping antibiotics. She'll also have cultures taken tomorrow to check for bacteria. Please pray for clear cultures. Unfortunately almost everytime we do follow up cultures they end up growing. We need clear cultures and a clear ct scan to keep moving forward. Thanks again to everyone who continues this journey with us, supporting us each step of the way. I'll update as test results come in.
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We enjoyed a quiet Thanksgiving last week. Grateful that Payton was healthy enough to be home with me. Prayers next week that the follow up ct scan of get chest shows the nodules have disappeared. Transplant is hesitant to take any offers for her until the spots are cleared. She sees infectious disease on Thursday and then the ct scan early next week before she finishes up the iv antibiotics. Thank you to everyone who continues fighting this battle right along side us. We ❤ you all.
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Booooo! Payton spiked a 104.8 temp. Headed up to the icu. Not a good start to our week. I'll update as I know more. They're treating her very aggressively. Poor thing is miserable.
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Read a Previous Update
Lauren Kailor Boothe
34 months ago
4
4

Dear Payton, we here at Chick-fil-A at Fort Collins still think about you constantly since we were able to assist you in August of 2014. You are continuously in our prayers. Your fight has been tremendous and I hope that someday we will be able to see you in great health. May the Lord guide you and always know that we stand behind you as well.

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Kaitlin Walter
26 months ago
1
1

Payton, from one CRPS warrior to another, may the light of God shine through you and through all the doctors in the surgery. May be give them the knowledge needed to execute this flawlessly. I pray that your pain is controlled very well, and you don't have to fight with them because you're in pain. You are so strong! You are going to kick ass just like you do for everything else! You and your family are in my prayers, especially today. If you need absolutely anything, or would just like to talk, message me and I will give you my cell. You got this, lady! #warrior #ferociousfighter

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Susan Delong
3 months ago

I know you don't know me, but I'm a neighbor. I always read your updates and send love and support. Please know that many more than you know are with you in spirit and sending healing energy for the tides to turn.

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Vicki Witmer
4 months ago

Please know that your entire family are in our thoughts, hearts and prayers. We are even keeping our fingers and toes for extra measure! As a chronic pain patient myself, I hope that Payton through all of this she has had good pain management as it is well documented and I know from experience that if one is in pain one does not heal nor sleep welI. I have had 1 friend who had issues with overgrowth of yeast-though not to Payton's extent and what they found that putting her on a yeast free diet was just the trick that allowed her to turn the corner regarding that health issue. We so appreciate that you are taking the time to update all of us as to how Payton is doing. Please continue to take care of 1 another. Please reach out and ask for help, support.

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Elizabeth Young
9 months ago

Thinking of you Payton and mom and family . You are so strong keep fighting , sounds like surgery is close now . Hoping the answers for your leg twisting will Help . Sounds like the new apartment is a good choice but I’m sure the move will be hard ! Good luck getting settled and hope that surgery comes soon . From Beth and Emma

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$26,735 of $50,000 goal

Raised by 276 people in 65 months
Created August 7, 2013
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KH
$1,500
Kathryn Higgins
2 days ago

Donated in honor of Jasmin Cox, from the Motherlove staff.

$50
Jane Thayer
12 days ago

As always, my prayers are with all of you!

Lauren Kailor Boothe
34 months ago
4
4

Dear Payton, we here at Chick-fil-A at Fort Collins still think about you constantly since we were able to assist you in August of 2014. You are continuously in our prayers. Your fight has been tremendous and I hope that someday we will be able to see you in great health. May the Lord guide you and always know that we stand behind you as well.

+ Read More
Kaitlin Walter
26 months ago
1
1

Payton, from one CRPS warrior to another, may the light of God shine through you and through all the doctors in the surgery. May be give them the knowledge needed to execute this flawlessly. I pray that your pain is controlled very well, and you don't have to fight with them because you're in pain. You are so strong! You are going to kick ass just like you do for everything else! You and your family are in my prayers, especially today. If you need absolutely anything, or would just like to talk, message me and I will give you my cell. You got this, lady! #warrior #ferociousfighter

+ Read More
Susan Delong
3 months ago

I know you don't know me, but I'm a neighbor. I always read your updates and send love and support. Please know that many more than you know are with you in spirit and sending healing energy for the tides to turn.

+ Read More
Vicki Witmer
4 months ago

Please know that your entire family are in our thoughts, hearts and prayers. We are even keeping our fingers and toes for extra measure! As a chronic pain patient myself, I hope that Payton through all of this she has had good pain management as it is well documented and I know from experience that if one is in pain one does not heal nor sleep welI. I have had 1 friend who had issues with overgrowth of yeast-though not to Payton's extent and what they found that putting her on a yeast free diet was just the trick that allowed her to turn the corner regarding that health issue. We so appreciate that you are taking the time to update all of us as to how Payton is doing. Please continue to take care of 1 another. Please reach out and ask for help, support.

+ Read More
Elizabeth Young
9 months ago

Thinking of you Payton and mom and family . You are so strong keep fighting , sounds like surgery is close now . Hoping the answers for your leg twisting will Help . Sounds like the new apartment is a good choice but I’m sure the move will be hard ! Good luck getting settled and hope that surgery comes soon . From Beth and Emma

+ Read More
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