foot pain for my son, Joshua. He could not sleep. Pain medication did not help. We ended up at Children's Hospital in Omaha with an appointment to see an arthritis doctor. He could not discover the cause, but suggested a medical boot and some arthritis meds. That's when the bills started.
By April, Josh had been transferred to the Gastroenterology Department. The blood work ordered by the first doctor showed elevated liver enzymes. The tests began. The photo shown is Josh drinking the "contrast" for his first cat scan. He was very brave. That stuff tastes nasty!
More tests: blood draws, an endoscopy, a liver biopsy. Diagnosis?
1. Auto-immune hepatitis
2. Ulcerative colitis
3. Enlarged spleen
Auto-immune hepatitis is a genetic disease. His liver and spleen were outside the boundaries of his rib cage. They were 4 cm. too large. To picture this, hold out your hand with your fingers closed. That's about it.
Josh was started on a whole handful of medications, including a large dosage of steroids which caused rapid weight gain and water retention. He went from a skinny 14 yr-old to a blimp!
Over a year and a half has passed. He has had many tests. He has had from 1 to 2 blood draws per month. We go to Children's Hospital in Omaha once a month to meet with his Gastroenterology APRN. Every other month, the Doctor from UNMC (University of Nebraska Medical Center) comes for "liver clinic."
His white blood cell counts are very low. He has a compromised immune system. He has cirrhosis. He should not have cirrhosis! He's never had a drink in his life.
Even with good insurance, the bills are massive. We live an hour and a half away from Omaha. So, there's gas, food, tests, blood draws, appointments...the list goes on and on. Earlier this year, he and I spent a week at Children's Hospital because he developed cellulitis in his right foot. He got it from a tiny pin prick. That's how compromised his immune system is.
We have always known that a liver transplant was in his future. But, now, it's getting closer. He recently began falling asleep in class. Not just nodding off. He was sound asleep. In a good week, he is in school for 3 days. In a bad week, he's lucky to get in one day.
During this Christmas break, we will be going to UNMC to meet with their transplant team. They will do a two-day evaluation to determine whether he will go on the transplant list. This is freaking me out.
I am setting a rather large number for this campaign simply because it would take me days to gather all of his current bills. We have been blessed with a family member who paid off our bills that went to collections. (Over $4,000). Another family member pays for all of his prescriptions.
We are flat broke and will deeply appreciate any donations. Even $5 will buy a tank and a half of gas.
Please, if you feel led, share this with your friends and family.
God bless you for thinking of us. We appreciate any and all prayers.
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