Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Jackson was born with Hypoplastic Left Heart Syndrome (HLHS). The easiest way to explain this is that he was born with half of a heart (the whole left side did not develop) He's had 4 open heart surgeries and many different procedures throughout his life. We knew that with this condition, he would eventually need a heart transplant. The timeframe of this was all dependent on how his heart continued to function. He is 16 and throughout the past months, and more specifically the past few weeks, he's gradually started to decline. His quality of life has not been the greatest. He's had many symptoms of heart failure such as nausea, fatigue, weight loss, no appetite and being pale and grey. We've been meeting with the transplant team the past month for several appointments and he was officially listed for a heart on Tuesday, October 23rd. Yesterday, things turned very quickly. We went to Minneapolis Children's for an ultrasound appointment. He was spacey at school all day, nauseated, extremely exhausted and quite pale. During the appointment he was so nauseated and his hands and feet were in a lot of pain. I stopped the ultrasound and called the transplant team. They admitted him immediately. He is in heart failure and quite sick. They started milrinone, which is a medicine that should help him to feel better and improve his heart function. This medicine is delivered via an IV, so they are going to put a port in his chest and he will have a backpack of the medicine. If everything goes in the right direction, we should be home in a few days. He also just moved up to the highest status level on the transplant list. The Dr. said that the absolute best scenario for him is to get a new heart. That may not happen quickly. The next best thing is for him to come home with a backpack of medicine in a few days.
I thought I would start this Caring Bridge site to keep everyone updated. There may not be much to report in the days/weeks ahead, but it is inevitable that he will need a transplant, so thought I should get this communication going. Also, those of you that know me and have journeyed with us when Jackson was a baby, it is very therapeutic for me to share updates and for our family to receive ongoing prayers and support.