Pray as Payton Waits for Transplant

$24,480 of $50,000 goal

Raised by 265 people in 62 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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Started off this week not as planned. Saturday Payton's dr called and her repeat cultures of her central line were growing bacteria.... again. She can't catch a break. Every single time she stops the iv antibiotics the repeat cultures grow. After a quick stay in the er she was admitted and new cultures were drawn. As of today the cultures are negative so we're hoping it was a contaminant. Discharge papers are in the works and we'll be out of here. Just in time for Kurt to arrive tomorrow for 4 days. Grateful that she'll be out to spend time with him. It seems everytime he visits she's sick. We also found out that last Wednesday they had another offer for her but once again the organs weren't viable. One day at a time..... Thanks again for all the continued support. Our village is amazing and we love you all!!!!!
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Yahoo!!!!!! She escaped. Yesterday she went to the OR and they were able to get a line in one last vein. They had to put in many many expanders as the vein is too small. Now we pray it stays open and doesn't collapse. This is probably the last open vein. Next they'll have to go into her back. For now we just pray this vein stays open. She'll continue the iv antifungal at home. Tomorrow we see a big wig in the prosthetic world. He's here for one day and doing 30 minute consultations to look at her prosthetic and make sure we've got her in the best. Excited to get his take on her leg. Next week we see her transplant team in clinic and we have questions. Just want to reaffirm some things. This whole process is exhausting and we never imagined that 16 months after getting to cleveland that we'd still be waiting for the transplant. It's so hard being here and we just miss our friends and family. Thanks again to you all for continuing to fight this fight right along beside us. We ❤ you all!!!
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Quick update. Payton's infectious disease dr finally came to see her today. They did a ct of her abdomen yesterday. The ct actually caught a little of her lung that showed a nodule. It's either infection or a pulmonary embolism. We're guessing the yeast is in her lungs. It would explain the shallow breathing and pain. She ordered an echocardiogram to check her heart valves because this fungus loves to attach to hearts. We'll know more tomorrow. She needs a new line but not until we're sure the infection is controlled. She's running out of access in her chest. She had to consent to a central line that will be threaded up through her back and spine then back into her heart. We're bummed that this is where we're at but her dr thinks this is the best choice and will give her chest a rest and hopefully be able to go back there later. I will update tomorrow once the test results are back and we have a game plan. Thanks again to everyone who continues supporting us and following our journey.
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I'm not going to lie.... the last 3 days have been terrible for Payton. The yeast growing is wreaking havoc on her tired body. We assume she also bacteria because the fevers have been relentless. Last night her breathing was very labored and shallow. They called a met but were able to get things under control. The bottom of her lungs aren't expanding fully and causing pain. The good news is that her fever has been kept under control today so that's a plus. We just hope that each day she improves and no more setbacks. I hate seeing her so sick and there's not a thing I can do to help her. I'll update tomorrow and hopefully she'll make more practice strides. I'm guessing she'll be there at least a week this go around.
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Read a Previous Update
Lauren Kailor Boothe
32 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
24 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
1 month 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
1 month 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
6 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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Raised by 265 people in 62 months
Created August 7, 2013
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Lauren Kailor Boothe
32 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
24 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
1 month 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
1 month 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
6 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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