As some of you may or may not know Jaylen’s specialist in Milwaukee referred us to the Masonic Children’s Hospital in Minneapolis Minnesota to get a consultation for TPIAT surgery. Jaylen was diagnosed when he was in 2nd grade with acute (recurrent) pancreatitis due to a genetic mutation called SPINK1. This disease has since turned chronic meaning that it has continued to get worse and will continue to get worse as time goes on. Chronic also means there is irreversible damage to his pancreas and it's functions. There is no cure for pancreatitis, and it is a very unpredictable disease that causes him debilitating bouts of excruciating pain at very random times. This has not been easy on him over the years, but Jaylen has never let this disease define him or what he can and cannot do. TPIAT surgery can hopefully offer Jaylen a Pancreas PAIN FREE life, but it also comes with its own set of lifelong changes for him.
Jaylen, Nancy, and I traveled to Minnesota the first week of September to get a TPIAT surgery consultation and to see if he would be a candidate for this surgery. After a variety of tests and talking to numerous doctors and specialists over the course of 3 days, they determined that Jaylen would be approved for the TPIAT surgery. When we asked Jaylen how he felt about this, he did not hesitate in saying “I want to do it!” We were a little shocked by this because we had just gotten done listening to numerous doctors talk about how major this surgery is, the details of the surgery, the risks, how difficult the recovery will be for him, and the way it would change his life (good and bad). They did not hold anything back. This to me was a testament to how much pain he actually deals with and how awful of a disease chronic Pancreatitis really is.
Jaylen was mainly concerned about when he can return to sports! If you know anything about our family, activities are what keep us all going and connected <3 Life of a teenage boy is football, basketball, track, and the newest golf.
The recovery will be long for him and it will be taken day by day. A full recovery from this surgery can possibly take up to a year. The doctors and other TPIAT patients say that depending on the person, they can be ready for full activity anywhere from 3 – 10 months after surgery. There's no doubt that Jaylen will try to heal as quickly as he possibly can! Our main goal though for Jaylen is to heal properly and be able to live a Pancreas PAIN FREE (long) life! One thing we ask of anyone is to NOT treat him any differently leading up to this surgery. Jaylen will continue to compete and participate in anything and everything for as long as he can until the surgery is scheduled (docs are aiming for November). Most importantly, Jaylen needs the hope and motivation that he may have a chance to participate and not have to worry about too much pain while doing so. We think prayers, positive attitudes, words, and efforts can really go a long way in how his recovery goes.
Here is a very brief description of the TPIAT (Total Pancreatectomy and Islet AutoTransplantation) surgery that Jaylen will have done (We have also attached a short video explaining the surgery. This is a major transplant surgery that will take around 12 - 15 hours to complete.
Jaylen will have his Pancreas, Spleen, and Gall Bladder removed from his body. Once his pancreas is out, they send it off to a lab to harvest as many good Islet cells (produce insulin for your body) that they can. While this is being done the doctors will have to reroute his stomach and small intestine. Once they harvest the Islet cells from his pancreas, they re-infuse those cells back into his liver and hopefully his liver will accept them and start producing insulin for his body. Depending on how the liver performs, there is a possibility that it can produce enough insulin for his body to where he does not have to be insulin dependent (diabetic). The islet cells in his liver can last on average 3 to 10 years, but the longest someone has been insulin free is 20 years post OP. If his liver does not do well, he could be insulin dependent right after the surgery for the remainder of his life. This is the trade off with getting this surgery done. To do this surgery they go in with an incision down his stomach and 2 camera ports on either side of his stomach. Jaylen will also need to be on a feeding tube for quite some time after surgery. After surgery he will spend at the minimum, 1 week in the ICU and hopefully start his physical therapy. After 2 -3 weeks he should be able to leave the hospital, but unfortunately will not be able to leave Minnesota. Nancy and Jaylen will have to live in Minnesota for around 8 - 12 weeks. After this surgery, they want the patients to stay in the immediate area for monitoring, tests, and check-ups.
This is obviously going to be very difficult for our family to not only watch our child go through something this extreme, but to also be away from our main support systems for that long. We want to thank you all for your continued prayers and support for Jaylen and for taking the time to read this. Our family is so grateful for all of Jaylen’s great teachers, coaches, friends, and family! We will need all of you in the months to come!
Much Love – The Noud Family
JAYLEN NOUD – BUILT FOR BATTLE
