On April 27th, 2023, my sweet 17 year old daughter was having severe trouble breathing. She had been getting worse for a few days and so we took her in to see if she had pneumonia. When we got to her doctor they sent us immediately to get a chest xray done. She couldn't hear any air on her right lung and very little in her left. They did her xray and found her entire right lung and most of her left was a complete white out. We were told to go to the ER and don't wait. We ran to the ER and they did an MRI. The doctor came and pulled me outside and showed me the scan and he had no idea what it was. He said he would make some calls but he was very worried and had never seen anything like that before.

We were rushed immediately to the Children's Hospital where they showed me that her trachea had been pushed all the way over to her left side of her chest and they had no idea how she was still alive and functioning. They performed a bedside chest tube to drain what was plueral fluid that had built up and pressing on her trachea and had collapsed her right lung and most of her left.

We spent 2 weeks in that hospital and they finally found out she has an extremely rare disease, even more rare in children, called Budd-Chiari Syndrome. In the midst of all this new information, they did alot more scans and ultrasounds to try to find the cause of this obstruction in her liver. Budd-Chiari is usually caused by a blood clot in your liver. However they never found one in hers. Her right side of her liver was enlarged and the fluid from the congestion was going to her lungs instead of her abdomen. We were tested for all sorts of infections and fungus and nothing came back positive.

We were then transferred to another children's hospital to have a liver scan done. They were supposed to be specialists but they never performed the scan until after 2 weeks of being there I had had enough and asked why that hadn't been done, so they finally did it the day before they sent us home. They messed with her medications that caused her to reaccumulate fluid and then they pulled her tube too early. To fix that mess, they gave her adult doses of Lasix and Spironolactone in very high amounts to try to fix their problem with the fluid and it started to affect her heart. She couldn't walk or eat. She would stand up and her heart rate would shoot over 140. She was vomiting, nauseous, faint and they sent us home this way.

We then ended up back in the ER 2 days later and back to the first children's hospital again. They placed a second chest tube to get the fluid under control again and lowered her diuretics back down. She finally stablized and they felt they couldn't do anymore for us so they sent us to Mayo Clinic. She was diagnosed with celiac disease, on top of the Budd-Chiari syndrome, this is apparently another rare side effect of celiac that has been reported that can affect the liver like this and push fluid into the lungs. Now, they are wanting to do a TIPS procedure to place a stint in her main liver vein to help the congestion and blood flow, but they don't know if that will fix it or not cause more problems. All of this has been very taxing on her and our family. The medical bills are piling up and trying to live here with her in the hospital and have our family at home has been very difficult. We hate to even be asking for help, but we are in dire need at this point. We have pulled what little bit we could from our home equity but it isn't enough to cover all her care. Thank you for any donation to help us help here in this very weird, rare complicated medical diagnosis. God Bless! ❤️❤️❤️