We are creating a site to help keep friends and family updated during and after Quin's surgery the end of June. Most of you have lived through all or part of Quin's journey but let me briefly catch everyone up. She was born on..just kidding, ok the medical stuff. Quin had her first bout of acute pancreatitis in April 2011 when she was 9. There was no known cause at the time. We spent time in Rapid City Regional, then had to LifeFlight to Denver Children's. We got through that bout and were sent home with a prognosis of "it will probably never happen again." She continued to have intermittent abdominal pain thru the next year and a half. I finally found a doctor at University of Minnesota that specializes in GI disorders. In the summer of 2013, we had 3 visits to the U of M, many tests and 2 surgeries. As many of you know, the aftermath of one of the surgeries almost ended very badly, but she has her own "Heaven is for Real" story that has changed all of us and many others for the better. After this, she spent almost 2 years pain free. This was so wonderful, and we thought the nightmare was over. However, in the fall of 2015, she started to have bouts of horrible abdominal pain again and by Christmas we could no longer deny the monster was back. We scheduled to see her doctor at U of M, but in the mean time, she had to be hospitalized in Rapid City, and Life Flighted to Minneapolis due to her status. Once at U of M, Dr. Freeman did another surgery to try to get the plumbing out of her pancreas to drain better, placing stents in her common bile duct and pancreatic duct and cutting the ducts to increase the diameter. We were sent home after about 2 1/2 weeks in the hospital, and had to return a month later to have the stents removed. This was an attempt to stop the pain as it had in the past, however it was unsuccessful. At this point it is the end of April 2016 and she has been in daily constant pain since the first week of March. She was only able to go to about 4 days of school between March and the end of the year. It was determined by the doctors she needed to be seen by the TPIAT team (we'll get to that), as all other options had been exhausted and her pancreas had many signs of irreparable damage. She had crossed the bridge into chronic pancreatitis, which is a one-way bridge. We saw the TPIAT team at U of M for 3 days in mid May, a comprehensive team of surgeons, endocrinologists, pediatric and adult GIs, psychologists, etc etc. They all meet (about 12 of them) after the evaluation to see if they think she is appropriate for the surgery. The decision has to be unanimous, one veto=no surgery. It was unanimously decided this was her only option to have a future. She is scheduled on June 29, we leave June 23 for Minneapolis for pre-op stuff.
Ok, the surgery. Sorry if I screw any of these details up! It is a 12-15 hour surgery. If you go on youtube, search TPIAT, then click on the one that says What is TPIAT?/ Medical Animation/Cinncinati Children's, it gives a nice animated explaination. Basically, they remove her spleen, dissect out the pancreas, cut small intestine off of pancreas, cutting blood supply last to preserve blood to the islet cells for as long as possible. The Islet cells produce insulin. The pancreas is then removed, put in a cooler, cooler into a car that drives to the other bank of the U of M to a special lab that will work to harvest the islet cells out of it. Meanwhile, her small intestines are re-routed and reattached to her stomach, her gallbladder is already gone, so they won't have to do that. The harvested Islet cells are then brought back and transplanted into her liver, hoping they will begin to produce insulin over time. She will have a feeding tube for about 2 months and will be given an insulin drip to let the Islet cells relax and try to establish themselves. We were told between 2-4 weeks in the hospital, then we will move to the Ronald McDonald House for approx another 6-8 weeks.
There is a 60% chance she will be a Type I diabetic right way, but if we are lucky and her Islets produce enough insulin, she will get some diabetic free years. Eventually though the islets will probably burn out and then she will be Type I. She will have to take pancreatic enzyme pills with any food she eats for the rest of her life to take the place of what the pancreas isn't doing. BUT... wait for it... 90 percent of her pain should be gone forever. She will have her life back, be able to go to school, play sports and just be an annoying teenager! The rest of it is "collateral inconveniences." Wow, I think that is enough for all of us right now. Please feel free to email the link for Quin to whoever I forgot. www.caringbridge.org/visit/quinlandguth (
http://www.caringbridge.org/visit/quinlandguth). Site Name: quinlandguth
