On Monday, 2/10/25, Crue had a checkup appointment at the newly branded Manning Family Children’s with his original doctor he started with. He rotates checkup appointments every two weeks between NOLA and Houston so that we are not traveling 5 hours to Houston every two weeks.
At the visit, his doctor felt that the fluid in his abdomen had increased. This is called Ascites. After conferring with the liver team in Texas, they had us go back to NOLA Tuesday and be admitted into the hospital. Over the 24 hour stay they ran two rounds of albumin and lasix through an IV to help reduce the fluid buildup in his abdomen. The next morning you could tell a noticeable difference already.
After the 24 hours he was discharged from the hospital and was able to go home. Crue is a rock star on floor 5 of the NOLA hospital. All the nurses love to see him and adore him as the cutest little boy they have seen. We are so thankful for them and the great care they provide him.
In the meantime, we’ll continue to monitor his abdomen size in anticipation to his next checkup appointment in Houston in a week.
On the flip side, with some good news, Crue turned 7 months old today! Also, earlier this week his transplant PELD score increased from 31 to 33. The higher the PELD score gets, the higher up the priority list for a donor he becomes. 40 is the highest possible PELD before getting into the two critical care status with very high priority.
Also, for those who have asked, Texas Children’s Hospital only does transplants with deceased liver donors. They do not do living donor transplants. If Crue’s health were to decline, we will then consider an alternative route. But right now, his health is rather good with all things considered. We are deeply touched by the amount of people who said they would volunteer to be tested as a donor to see if they would be a match. For those offers we greatly thank you for your kindness and hope that we get a donor before going that route.
The fundraiser has had a great start! We hope to continue that momentum. We really appreciate those who have donated to the COTA for Crue campaign, and we thank you very much!
My husband is going through kind of the same thing. He is on Lactose, Zofran and Furosimide to date he has not had asides since 12/30/24. Finding a formula is definitely key. I hope Crue can find a formula that works. We are heading for outer econd transplant consult. His numbers are getting better. Prayers love and hope for Crue!
Prayers for your family, I’m also on the donor list. If I’m a match they will contact me. It would be an honor to help this precious fella. I have 6 grandkids myself. God speed.
Sending lots of love and prayers from Nebraska!
Lots of prayers I’ve been following your story and I was going to try to be a liver donor but I see that you guys need a dead person and I’m very much alive I wish you guys nothing but the best I’ve been a follower of you guys for many years seeing your family grow and he will too I have faith that somebody will be a good donor for him I couldn’t imagine my kids going through that I will be thinking of you guys and be watching your shows me and my children absolutely adore my late husband did also you guys are amazing family so strong and inspiring
Oh, my heart goes out to you and your family. Nothing worse than a sick child. I pray he receives the liver transplant he needs.