It’s been a little while we last provided a detailed update on Crue’s donor dry runs and the multiple central line replacements. We left off on his Feb. 22 update that he experienced his first donor call dry run, received his TPN central port and removed his NG tube.
3/31/25 we brought Crue to Children’s Hospital in New Orleans because it appeared that Crue had pulled his TPN central line partially out of his chest. They did an x-ray and determined that it was out of place and needed to be replaced. They couldn’t get him into the OR that day so we had to spend the night in the hospital. By the next morning the line was leaking TPN out of his chest to the point they had to move up his procedure to take care of it. This procedure requires them to put him under antiscia. After a few hours he woke up and he was discharged from the hospital to go home.
With Easter Sunday approaching we were going to be on the road to Houston on Easter so we decided to do Easter on Saturday with Miley and take pictures. Saturday evening, 4/19/25, we received Crue’s long awaited second donor call! It had been exactly two months since the first call and we got to the point that we weren’t even anticipating it anymore. We hit the road to Houston that night and arrived at Texas Chrildren’s Hospital shortly after midnight. The following day was Easter Sunday and the hospital hallways were empty and they couldn’t tell us when the OR was scheduled for transplant because they didn’t know yet. They finally came to us to tell us that the transplant was rescheduled to the follow day. The liver offer was from a donor with type B blood and Crue’s blood is type O. It’s said children under the age of one can receive a liver from any blood type. But Crue’s antibodies in his blood have the highest resistance to type B blood. They decided to do procedure to put a catheter in his neck artery and filter his blood to take out those type B antibodies as a precaution. The procedure to insert the catheter was done the Sunday but the filtering would not be done until Monday morning before the transplant would occur. Monday morning at 7am we received a phone call telling us that the transplant had been cancelled because overnight the donor took a turn for the worst and none of their organs were no longer good for transplant. This one was hard to take emotionally because we waited so long for the call, had to wait an additional day, had a catheter inserted into his neck, and really felt like it was faith that called for his transplant to happen on Easter of all days to have a second chance at life. They had to put Crue under again to remove the catheter that ended up being put in for nothing. He was discharged on the Monday and we went home from dry run #2.
The next day, 4/22/25, Crue’s central line port sight had some yellow and green coloration under his bandage. We sent a picture to his doctor at TCH and they decided they wanted us to go to Children’s in New Orleans to have our doctor there to check it out. We left work and headed to NOLA. We were an hour down the road and 10 minutes away from the hospital and received a call that told us to turn around and head back to Houston because we have another donor! We turned around and drove back home another hour to grab anything that we didn’t have packed and headed to Houston. We were told this donor was type B blood also. About an hour away from Houston we received another call thing us that they received another offer from a donor with type O blood and decided that offer would be better for Crue. Two donor offers within 6 hours of each other, and third offer within 3 days! We got to TCH that night and settled in. The next morning we received an OR transplant time for 3pm. Around 1:30pm we still hadn’t gotten a cancellation and the nurse came brought him a surgery gown to put on. But just a half hour later at 2pm we did receive that cancellation call stating the donor’s liver size was not a match when they got to put their eyes on it and measured. Another big emotional letdown thinking this would be the one with how wild this story would be. While we were there they decide to change out his central line for the third time due to the leaking that was the reason we were headed to NOLA in the first place. We had to stay another night in the hospital as it was too late to fit him in for the replacement procedure. The next day the procedure was done and we headed home.
One week later, on 4/30/25, we received donor call #5 and headed right back to Houston. The next day while awaiting for them to schedule an operating room time, the surgeons requested imaging from the donor to review the size of the liver. After receiving the donor’s imagining the surgeons decide that the donor liver would be too large for Crue and cancelled the transplant for the fourth time. While we were there the doctors felt Crue’s central line was having some leakage at the insertion site and decided to replace his line for the third time. After another night’s stay and the line replacement he was allowed to go back home.
On 5/8/25 we reported Crue’s weight to the doctors and they were concerned that his weight was too rapid and feared that we was retained fluid in his abdomen which could cause infection. They sent us to Children’s in NOLA for them to check him out. After doing an ultrasound they determine there was a little bit of fluid but the weight gain was true weight. But since we were there they wanted to run the diuretic IV to remove what fluid was there. The central line was leaking yet once again and they had to replace it for the fourth time. The line was replaced the next day and he was discharged later that evening.
After receiving four donor calls within a eleven day span, it was three weeks before receiving Crue’s sixth donor call on 5/22/25. We arrived in Houston that night, the next morning we were told the transplant wouldn’t be until the following day. They requested donor imaging again and after reviewing the imagining they came and spoke with us to tell us that even though the donor liver is a little on the larger side, they felt it was worth them being able to put their eyes on it in person and hoped it would be slightly smaller than what they were seeing on the images. This next morning we received an OR time for 1 pm that shortly after got pushed back to 3 pm. Right after noon we received a call telling us the transplant was cancelled because once seeing the donor liver in person the liver was abnormally large. We packed up and went home disappointed for the fifth time.
It’s been a little over a week since the last donor call and we continue to wait on pins and needles. After five dry runs it gets more and more disappointing each time because you believe odds are that this will be the one each time as it gets further along. It’s very frustrating but we gain confidence and comfort that the surgeons will only transplant the perfect liver for him that gives him the best chance of survival.
Crue has a lot of supporters and so many praying for him. For that we can’t express enough our gratitude for you all. The lord has been taking care of him in the meantime. Crue is 10.5 month and has gained a lot of weight and been very health otherwise. Very time his doctors in Houston and New Orleans see him they say he unlike any other biliary atresia kids they have seen because he’s so big. His weight of 26.5 lbs in the 99 percentile and height is in the 90 percentile. We pray that transplant happens soon while he’s in great health in order.
We will continue to keep everyone posted with any updates. The fundraiser in honor of Crue is doing well and has done wonders to help us with the constant expenses from all the hospital trip. We did a Crue’s Cause t-shirt fundraiser and sold over 400 t-shirts to help support Crue and to provide support to a few other medical families with young children who we have meant on Crue’s journey. We hope to continue the fundraising momentum. All donations to COTA in honor of Crue assist with his lifetime of transplant related expenses. Thank you for your generosity!
Thank you so much for helping Baby Crue!