Apr 17, 2017 Latest post:
Jun 19, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Courtney's transplant journey started 3 years ago when we learned she was starting to get varies in her esophagus and needed to be banded once a month at Phoenix Children's Hospital. Since she was turning 18 we decided to transfer her care to Mayo Clinic in Scottsdale. She went through a Liver Transplant Evaluation and it was determined that she needed a new liver. At that time her MELD score (determines where you are on the UNOS transplant list-scores for livers range from 9-40, with 40 being the highest and most urgent need) was a 12. We quickly learned that our insurance company would not pay for the transplant until she reached a score of 15 or higher. For the next year and a half her score ranged from a 12-14 but never reached the coveted 15. Since January 30, 2017 she has been admitted to Mayo Hospital with Spontaneous Bacterial Peritonitis (an infection of the ascites fluid in her abdominal cavity), 3 GI bleeds, the ICU with a failing liver, 2 bacterial infections in her blood, 4 veins around her liver that have completely clotted off. She is now on the Liver Transplant List at Mayo Clinic with a MELD score of 30. Since January her conditioned has continued to worsen. In April Courtney's main veins that lead to the liver completely clotted off. Her Portal vein, Superior Mesenteric vein, and her Splenic vein were of no use to the transplant surgeons. It was decided at Mayo that she was no longer eligible for a liver transplant because the surgeons said they had no longer had any major veins to hook up to a new liver. They referred her to Nebraska Medicine in Omaha. We flew up on an Air Ambulance and she was evaluated for a liver, small bowel, and pancreas transplant. Needless to say, Terry and I were shocked that she went from a liver to possibly a 3 organ transplant. After being in Omaha for 7 days for an evaluation and waiting for an answer from the transplant team, we finally heard that she would indeed need the multi organ transplant. Courtney was listed with a 30 MELD score and after waiting for only 9 days she received her new organs in Omaha. The surgery took 8 hours and her intestines were a huge mess. It took 3 surgeons 5 hours to get them out of her abdomen. They said they had never seen such a complex case. Unfortunately after 24 hours the organs started dying and a decision was made to retransplant her. She was listed as Status 1A, which means she was at the top of the UNOS Organ Donation list. This status listed her first in the nation. After 24 hours new organs were procured and she went back to surgery. It lasted half the time at 4 hours. After anxiously awaiting, the new organs seem to be doing just fine. Four days later we had a major setback. Courtney had a stroke. It was an Ischemic stroke in the Cerebellum on the left side. Terry and I had seen her deteriorate over the afternoon, but never thought it was a stroke. We watched her lose focus and develop tremors in her hands, feet, and face until it was evident something was very wrong. After doing CT scan and an MRI, if was determined she had had a stroke. The first 2 days were emotionally draining. She didn't move or follow commands. Then she started moving her hands and arms and following commands. By the end of the week she was trying to talk, could swallow liquids, and showed good cognitive function. Today it is Day 60. We are still in the hospital, all cognitive function is back, she can sit up in a wheelchair, is eating a full diet, but she cannot stand or walk at all. She will go to a long term acute care rehab place here in Omaha called Madonna.