Ember Rayne Carey is a 24 month old currently on life support and dialysis after a heart transplant on July 16th, 2015.
Our journey began in 2014 at 6 months of age.
We took Ember in for her 6 month well check and they found a heart murmur. They told us we needed to see a cardiologist to see what it was all about. One week later we saw Dr Rodrigo Rios at Essentia Health in Fargo. He did an ECHO, EKG, and other tests. He found her heart was enlarged and we had some blood leaking into her lungs from back flow. He had us immediately drive to his home hospital in Minneapolis, MN for treatment. When we arrived they immediately started hooking her up to various machines and IVs to start treatment and find out what was really going on .
On May 7th we got the official diagnoses of non compaction cardiomyopathy. They started her on IV meds and we saw improvement right away. We stayed at that hospital for about a week and things stablized and they sent us home. We were home for about a day and a half and she started to not have wet diapers anymore. We took her back to Fargo and they got in contact with Dr Rios and he lifeflighted her back to Children's Hospital and Clinics of Minneapolis. They imediately placed a feeding tube and started IVs again. She was stablized but not able to keep anything down. On May 17th at 2:30am she went into Cardiac Arrest and had a stroke, She was put on life support. Dr Rio's contacted the transplant team from the University of Minnesota Masonic Children's hospital to have her evaluated for a heart transplant.
On May 22nd we were transfered to the U of M and they were able to successfully remove her from the life support and keep her stable. While listing her 1A on the transplant list. We lived our lives at the U of M. with many ups and downs along the way for about 9 months. In November of 2014 things started to improve. She was able to have a pacemaker placed on Dec 17th, and was discharged to us on Dec 22nd. We went home in January with regular month check ups back in Minneapolis. During that time since she was stable she was listed as inactive on the transplant list.
She was home and happy, thriving with her family and friends till June 16th 2015. On that day she was readmitted to the U of M for heart failure. And replaced on the transplant list 1A. They placed her on a Milrione IV through her chest and she was able to go to the Ronald McDonald house with her dad since she had to stay close.
On July 16th we recieved "the call" that we had a new heart. They did the surgery on July 17th and everything went well. The doctors told us usually at 4 hours after there is a "drop" but it usually bounces back on it's own. Well when her "drop" happened her blood pressure also bottomed out and they had to do compressions on the heart. With the compressions and medications she bounced right back but the heart was beating a little too fast. It was having a hard time regulating itself. We met with the doctors and they said the best thing for her body is rest so they placed her back on life support to be able to give the new heart it's best chance. The next day she was having a little bleeding so they placed another tube to try to help with pulling that excess fluid out. She has been remaining stable so far but the left side of the heart isn't pumping so we're still waiting. We were transferred to Mayo hospital in Rochester, MN on Aug 4th. Since here we have had a bit of progress with adding a stint and we were able to remove the LA Vent.
She has been remaining stable but is now also waiting for not only a new heart but a kidney too. God has a very special plan for her. Please help us share her story. Let it give comfort to those that need it. Let her strength wash over each of you and bestow blessings upon you. "May blessings Rayne down upon you, and Fire ignite your souls!" #TeamEmberRayne
All proceeds go to the Carey family for needed living and traveling expenses.
#TeamEmber with Nathan Carey
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