Joshua has a congenital heart condition that decreased the ejection fraction and enlarged left ventricle.
He had been stable up until March 2018 when we were told he was in heart failure and needed a transplant. Medications were added to help him.
April 2018 he ended up having a PICC line put in and IV home infusion of a medicine that helps the heart squeeze harder.
May 2018 his right side had become enlarged and valves were leaking. A ventricular assist was considered but just not right for us at the time.
July 16, 2019 we received a call from nurse asking us to take him to ER due to labs that showed some critical levels. He was in pediatric ICU in Rochester, MN receive treatment to get blood levels back to normal. A few days in his doctor told us he had to stay until he got a transplant because we couldn't do IV meds at home. He needed 24/7 care.
Thursday August 4th he was very restless and then started sweating, got weak and had trouble breathing. He was taken straight to surgery and put on ECMO, which is a heart lung machine.
Just after midnight on Saturday August 3, 2019, I got a phone call at 12:48 am from nurse on transplant team. She said we have accepted a heart for Joshua. I was in shock! Everything is happening so fast and we were not prepared for all of this at once. He had his transplant same day.
Everything went well. He is now retaining a lot of fluid and kidneys are taking a hit. They will start dialysis to help his body with the extra fluid. It's been over 10 days since and I haven't been able to talk to him from either sedation, delirium, and granulomas on voice box.
What an incredible journey that we are on and still a long way to go. We sincerely appreciate all the support and prayers!