Below explains what miss Piper has been going through:
Piper was born with a duplicate portal vein which causes her to have portal hypertension which causes the esophageal varices (varices are veins that over fill with blood and when they rupture you can bleed to death quickly) and liver disease. And on top of that they discovered her liver was covered in fat which is a separate condition, a fatty acid metabolic disorder also causing liver disease. Her duplicate portal vein is very rare the Dr. here in Arizona has reached out all across the country for help on what to do next. Piper's parents were unaware of this condition until she began to vomit blood.
November 6th, 2016 after a few days of what we thought was the stomach bug Piper threw up blood in her daddy's lap. We rushed her to the closest hospital where the transferred us to Phoenix Children Hospital. They started tests when we got there and took her to ICU. They gave her blood and took her to the OR to see where the bleeding was coming from. (at this point she was pooping it out as well) They discovered in her exploratory surgery that she had a varices rupture. Since this day, every two weeks she goes to the OR for sclero therapy. These are injections into the varices that cuts off the blood flow and redirects it to a new location. It is a band-aid, the varices always return. She also takes daily meds to help with the edema, irritation in her belly, and her nausea. She receives blood when her levels are low. Piper's medications are not covered by her insurance which puts her parents in a very tight spot. Piper's parents both work, but must work opposite shifts due to Piper being unable to attend daycare. She has a low immune system which make her vulnerable to any illness. Any type of stomach bug makes her have a higher chance at a rupture.
Sadly on July 5th, while Piper's parents were getting their older two girls ready for camp, Piper began having dark bloody stools. Which means she has a rupture, but it is a slow bleed. She was rushed to the ER where she was admitted and stayed for 5 days. While in patient, she caught C-Diff, which is a very harsh intestinal infection. They even 3d printed her liver. They discovered that the treatments they have been doing are no longer effective and causing permanent damage to her esophagus. Their team at PCH reached out to a Dr. in Chicago that specializes in a Rex shunt surgery and many other procedures to see if he could help Piper. August 2nd, they heard back from Chicago and found out that Piper IS a candidate for Dr.Superina to operate on! This man has worked miracles on children. It won't cure her or make everything better but it should stop the varices therefore no more procedures every 2 weeks. Piper will be going to Chicago for surgery. Piper and her parents will be there anywhere 5-8 weeks depending on how she does. The surgery is big and scary but is their only option. Their older girls will be staying in Arizona to go to school. This is a very big emotional, physical and financial strain on their family.
***Tricare covers some things, but when it comes to Piper's meds they do not. She must take a compound med that is not covered under her insurance. Her parent's also have Echo insurance that does not cover it either. Meagan has spoke with insurance and everyone she can think of to discuss it but there is nothing that can be done.****
- Jeramie kropatch
- Destiny Navarro
- Erica BARNES
- Erica Barnes
- Craig Rowe
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