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.
I am creating this page on behalf of our oldest son, Braedon, who is 15 years old. As many of you know, Braedon received a liver transplant when he was just four years old due to Acute Liver Failure. He was under the weather, with symptoms typical of a normal "bug" when he started to appear jaundice, extremely lethargic and nauseous, and had noticeably dark urine. Inside of 2 weeks from when his first symptoms appeared we went from the ER, to a follow up with his Pediatrician, to an urgent referral to a Pediatric Hepatologist (Liver Disease) to Braedon being listed at the very top of the UNOS list (national donor registry). Braedon received his gift of life on August 22, 2009. The details of this journey are dark and difficult to talk about to this day. Acute Liver Failure is rare in children and in nearly 50% of the cases a cause cannot be determined. This was unfortunately the case with Braedon. His liver was so diseased that pathology was unable to determine a definitive cause. The most likely explanation is that he had a virus that his body just could not fight. Transplant was his only chance for survival.
If you are interested in learning more about Acute Liver Failure, this is a great synopsis: https://www.cincinnatichildrens.org/health/a/acute-liver-failure
Braedon is now 11 years post-transplant and for the most part has done extremely well. He is on medication that suppresses his immune system so that his body doesn't attack his transplanted liver. He will most likely need to be on these medications for the rest of his life. This, in turn, makes him even more susceptible to viruses and infections - so living through a pandemic is something that transplant patients and their families have to be even more vigilant about. It's a delicate balance that requires a lifetime of timed medications, blood draws, liver biopsies and clinic visits to keep the transplanted liver healthy. Thankfully, Braedon has the best doctor and transplant team at Mott Children's Hospital in Ann Arbor and we have all of the faith in the world in their care. **Fun Fact - Braedon's doctor has been at his side since the very beginning and it will be very traumatic for our entire family when B transitions out of the pediatric unit into adult care (for Friends fans - Braedon will be like Ross still seeing his pediatrician well into his 30's LOL).
So this brings us to the here and now. A couple of weeks ago Braedon started to feel nauseous, etc. after he ate. We didn't think anything of it at first because our daughter has food sensitivities that started around the same age, with the same symptoms. B was due for regular labs this week and so I made a mental note to mention this to his doctor when discussing his lab results. Then last week he said that he felt unusually more tired. Wanting to sleep all the time and not very much energy at all. He was still feeling nauseous on and off, and he also started developing itchy skin around his incision scar which ultimately spread all over (itchiness can be a sign of rejection). When darker urine was noted and we thought he appeared slightly jaundice, we knew something more was going on. We brought him into the ER at Mott last Saturday and he was admitted to be evaluated for possible rejection. He has had to have pokes each morning for lab draws (which even after all these years he is not a fan of) as well as an ultrasound, MRI, and liver biopsy. We just received results from the biopsy last night that determined he is experiencing moderate acute rejection. He has some inflammation around the portal vein through the liver as well as in the walls of the bile ducts. **It's important to note that even though the word "rejection" is scary, it is quite common in transplant recipients and is treatable in most cases. Acute rejection this far out post-transplant is usually triggered by something. This could be a virus or possibly a medication irregularity. B started a regimen of steroids and other medications (similar to what he was on right after transplant) with the goal of reducing the inflammation and allowing the liver to regenerate and heal. Once this is achieved and his labs are trending back down toward a normal range, he will be able to go home and continue the regimen of meds at home.
Braedon has always been a trooper and for the most part is very adaptable to his circumstances. He understands that transplant is a lifetime journey and this is just one of those bumps in the road that he has to drive over. While he is happy he doesn't have to be in school this week, he's feeling pretty down that he has to be in the hospital for at least another three days, especially this close to Christmas. He's feeling a bit homesick, but fortunately I've been able to stay here at the hospital with him so we've been trying to make the best of our time. If you would like to drop Braedon a note under the well wishes section I know he would love to hear from you!
I will post an update in the next few days once we have a better picture of Braedon's labs and what the longer term plan is as a result. In the meantime, we want to thank you all for your encouraging words, messages, and prayers. It's been a stressful week, but we have a wonderful village of family and friends that surround us with their love and support.