September 21 was just like any other day until my precious daughter Lacee came home from being at the fair for less than two hours . I immediately knew something was wrong because she was counting down the day’s until she could go hang out with her friends.
I asked her what had happened and she said that she just had a really bad headache and was nauseous so she just wanted to lay down. That was about 4:30 pm.
I checked on her often before going to bed trying to get her to drink some water, to no avail.
I finally got to bed around midnight and was woken up by Lacee about 2am she had been vomiting . I went to the bathroom with her and held her hair.
As I sat trying to keep it together , buy I was terrified when I saw what looked like coffee grounds everytime she got sick.
As soon as she could get her robe and socks on I rushed her to St.Johns in Broken Arrow. They immediately knew she was bleeding internally but they didn’t have a clue what to do, so they transported her to OSU medical.
Once we got to OSU she was taken down for an Endoscopy. That was the longest few hours of my life. Once she was in recovery the Dr came and took me to a conference room where he proceeded to tell me that Lacee has a very rare condition called Budd Chiari syndrome as well as Jax 2 blood mutation.
Dr James also informed us her main portal artery that runs from the liver to her spleen, is full of blood clots. Her liver is almost non functional and she bas varcies from her esophagus throughout her entire stomach and most organs.
Since being diagnosed she has seen more Dr’s than I can count.
She’s had appointments with the Liver Specialist in Oklahoma city , but after looking at all her scans and Endoscopy photos he decided because her spleen was so large and pushing all her organs into her back causing her terrible pain.
But, I have to say, she never complains about anything. All the poking prodding, bone marrow biopsy just everything really. She’s definitely an inspiration for me, she’s scared of course, but she’s been so courageous I’m just in awe of her strength .
After about a month we found a Dr. At Integres Baptist Liver transplant. I was finally able to breathe again until we got there that is.
Once we arrived we were told her health insurance wouldn’t cover her any longer because she was high risk. They were still very much wanting to see her, but it would have cost 4000.00 that day.
I’m on disability due to an accident that broke my tail bone, shattered my sacrum and so on. There’s just no way possible for me to pay that amount.
Since then, I have been down every single Avenue I can think of.
Please please please help me keep my daughter she’s so very young and has so much more to do.
I want to see her get married, have babies all the endless dreams a Momma has for her child .
From the bottom of my heart to the top, thank you so much for your time.
Take care and God bless 🌷⚘❤💚❤💚🥀⚘🌷