COTA for Reese's Journey

Our Story

Reese was diagnosed with biliary atresia at just 3 months old. Biliary atresia (BA) is a rare disease in infants in which the bile ducts outside and inside the liver are scarred and blocked. Bile can’t flow into the intestine, so bile builds up in the liver and damages it. The damage leads to scarring, loss of liver tissue and function, and cirrhosis.

At 4 months old, Reese underwent a Kasai Procedure which is a type of surgery to remove the diseased bile ducts to the base of the liver and re-establish bile flow from the liver. The surgery went smoothly and was successful, but following the procedure Reese was in and out of the hospital due to the damage to his liver.

At 7 months old, Reese received a liver transplant. By the grace of God, Ron was a match to donate a part of his liver for Reese. After transplant, Reese was able to go home after 20 days in the hospital. Shortly after coming home, Reese’s routine lab work showed a significant rise in numbers. He was admitted twice to receive different doses of IV steroids in order to save his liver.

We quickly learned one thing, life after a liver transplant is not easy.

While Reese enjoyed a long stretch with no complications, we were reminded that there are always going to be serious challenges when his June routine lab tests came back alarmingly HIGH. Literally within hours he started showing signs of jaundice and itching his face, when days prior to this, we had no clue that anything was going on internally. So now we head to Chicago, Lurie Children’s Hospital, our home away from home, for a liver biopsy and ultrasound. We are expecting to hear rejection but biopsy came back clear and ultrasound found a blocked bile duct. On June 24 they attempted to place a stent through the bile duct to stretch the scar tissue but couldn’t get through it at all. Apparently it had been blocked for a while because his liver was very inflamed and irritated and since they couldn’t get through it they had to place a bypass stent to drain bile into an external bag. Not fun with an active toddler. They made a second attempt on 6/29 but it was still completely blocked. We were discharged with the external drain bag on 7/2 with an appointment to try again on 7/15 hoping to give liver time to recover.

Since 7/15 would be the 3rd attempt the Liver Team began planning next steps in case it was still too blocked, anything to avoid major surgery to repair the bile duct. Also explained that this type of scar tissue blockage is common and, sadly, can continue to pop up until he gets bigger with age. And…of course, still too blocked as out patient procedure on the 15th. So we travel back home again 3 1/2 hours to hope and pray that Luries can get Northwestern hospital to agree to do a Cholangiogram, a procedure where they use a camera to actually see the blockage.

After a lot of negotiations between hospitals we were scheduled to do the procedure on 7/22…and we are so very grateful to report that they were finally able to get through the blockage!!! Prayers answered for now, no surgery!!!! Admitted for 6 days this time, discharged with plan to return as out patient drain exchange on 9/3. At that time, liver looked good, bile duct flowing properly but decided to increase the size of the stent and give it all 6 more weeks to be on the safe side.

This episode taught us that hospitalizations with a toddler is quite the challenge!!! Going under anesthesia so many times is very scary as well. Reese hasn’t been able to swim this summer nor has he been able to get in the bathtub since this all started 
In June!! At home care means weekly 4×4 waterproof(very, very sticky) bandage changes (usually takes 3 of us), continued twice daily meds and flushing of the stent/drain.
Again, we are so thankful for the science and technology that is available. We also appreciate the people who donate, and pray for us and help in any way.

Please consider donating to COTA for Reese’s Journey to help with a lifetime of transplant-related expenses that will be accumulated. Your contribution will go toward transplant-related expenses like Reese’s month-long hospital stay, hotel stay, weekly doctor’s visits, meals, household bills, and time off work for Ron and Lexi. All donations to COTA in honor of Reese, big or small, are greatly appreciated.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.