Please help CJ while he waits for a new heart

***UPDATE 03/01/2024***

Hi Everyone,

I am opening the GoFundMe page again due to CJ being back in the hospital and undergoing a very intense surgery today.

Here is an update from his mom, Jess: “We just wanted to let you everyone know that they are moving forward with doing the open-heart surgery for his VAD on Friday, March 1st. After talking to the surgeon, we agreed it does make the most sense. There are risks and one of them being is he said he is 75-90 % sure he can fit in the one he can go home on. If he would not be able to once, he goes in, he will have to use the other one which will leave him stuck in the hospital. With that will most likely bring a trip to Columbia to get the transplant there. Please pray he is able to get the one he can go home on. There are so many more benefits to that, plus he can go home. Also, for him, he is nervous cause it is pretty soon like he said, but also his sisters as well. There are other risks obviously since it is an open-heart surgery. They will be coming to get him around 7:40 am Friday morning. The surgery should start around 9am and last about 6-8 hours. There are some other things that need to be done while they are there. Please pray for strength for us as we wait, for the surgeon’s hands, for the pump to fit in so that he can go home on, and everything else to be successful. For no chance of stroke, more bleeding than normal, seizures, clots, or death. God is going to be with him, but as always waiting will be hard. We appreciate all the prayers and ❤️. ”

The extra funds will help the family with financial needs as Casey will be driving back and forth, may have to miss work and taking care of the girls. The funds will go to things such as:

Other things that are helpful would be anyone that is available for before/after school care for the kids. The family resides in the Dallastown school district. Jess’s family lost their Aunt Mary last year, who was a huge part of their support system, and they are still trying to figure things out.

If an email is needed, please send me a message.

If you are unable to donate, please pray for this family. They have been through a lot this year, as CJ is really sick, and their family cannot be together.

Here is CJ’s story from his mother, Jessica Adams…

My son CJ was born with a congenital heart defect. He was also diagnosed with right ventricular aorta with pulmonary atresia, and an atrial and ventricular septal defect, as well as transposition of the great arteries.

From the time of me being 5 months pregnant till birth, all of my appointments were at the Childrens Hospital of Philadelphia. CJ was born there and had his first surgery at 2 days old. His next surgery was at 7 months old. At this point, they placed a pacemaker to help his heartbeat in rhythm. He has been on various heart meds over the years. He is now ten and a little over a year ago went into heart failure.

He was at a routine cardiologist’s visit when we were told the news. They admitted him into the hospital back in August of 2021. They determined he had Left Ventricular Dysfunction. Since he was in heart failure, they placed him on the milrinone. They attempted to wean him off of it after 2 weeks. After just a short time with how he was and his blood work and echo’s, it was determined his heart needed support. Once back on it, they started to discuss transplant. After a week of various tests, talking to doctors and signing papers, CJ was officially placed on the transplant list October 4, 2021. Since they ran tests, we were told his antibodies were really high. For someone who is waiting for a heart, which was not a good thing to hear. They could only match him to about 15% of the population. He was already in a hard category for his age and size, but this made it harder to find a match. He was able to go home on October 21, 2021.

While home, we continued monthly treatment to help with his antibodies. We came in regularly for checkups and appointments. He received at home nursing to help with dress changes, and other needs. We were connected with a home care company to help with his milrinone, flushes and other supplies. He made several trips back to the hospital during his time at home. He developed blood clots and was placed on a blood thinner. In January of 2022 they placed a Broviac in his chest to get his milrinone through. He carried his pump and medicine bag around in a backpack we got for him. Our time at home was short, cause on March 28, 2022, we were admitted back into the hospital. His BNP and other blood work was not good after his most recent appointment. They needed to go up on his milrinone. While here they decided to try another treatment for the antibodies. After the 3 weeks, it was shown on the blood work was not effective. After discussions with his doctors, it was determined the best thing for CJ in the long run was to be in the hospital. He would be of the highest status. Since we have been here, he has done three treatments to help with the antibodies, all of which are not effective. They started another one back in September, and it goes on till December. He has his ups and downs with his kidneys, and other levels. He is stable for now on milrinone.

At this point at thanksgiving, we have been inpatient for 8 months. His high antibodies make it hard for him to go home and wait. He has had a few offers so far, but they have not been able to accept any due to the antibodies not matching. We were told even if they find a perfect heart his chances of rejection after are really high. His body seems to reject everything they want it not to. We are praying daily for his miracle.