TheMiranda Family Hospital Journey

Jonathan and our Family have been in the hospital for  over a year, Jonathan is no longer a candidate for heart/double lung and liver transplant bc the liver transplant program at Shands Children's hospital has been shut down by UNOS , and the Drs here have tried all the major hospitals in the country but all have said no bc he is too complicated...So we are heading to Phoenix children's Hospital to receive palliative care .  I (Jonathan’s Mom) have set up this page because life, bills and expenses do not stop or go away, sometime they even compound. Eli and I have made the decision to set up this account for those who have asked or can help us a little bit financially in this journey we are going through right now.  

That being said I would like to share and update Jonathan’s Journey for those who may not know his whole story:  Jonathan Carlos Miranda was diagnosed with a congenital heart defect know as Hyperplasic Left Heart Syndrome and Heterotaxy syndrome. At 6 months of age Jonathan received a gift of a heart transplant, and from there we thought Jonathan’s struggles would be few and far between because his main issue, his heart, was fixed.  As time went along and Jonathan grew he required more and more oxygen. Finally in January of 2013 Jonathan was taken into the Heart Cath Lab to see what was going on, and they found out Jonathan had Pulmonary Vein Stenosis. So in March of 2013 Jonathan went in for another open heart surgery to repair one of his pulmonary veins, though the initial surgery was a success it was short lived, 6 weeks later Jonathan was back on Oxygen and his doctors were at a loss as to what was truly going on inside his body.  Boston Children’s Hospital was consulted and few solutions were given to Jonathans transplant team. As all this was going on from April of 2013 to Feb 2014 Jonathan managed to remain out of the hospital and enjoy life.  Then in March of 2014 Jonathan could barely walk without getting so out of breath where he would cry because he was so frustrated he could not do what he wanted.  At that time we were at 5 liters of O2.  This is when Jonathan’s medical team said we could no longer be safe at home anymore that they needed to reassess Jonathan via another heart cath. So late March Jonathan went in for another heart Cath.  The heart cath showed that Jonathan had only one full functioning pulmonary vein, with this new information Jonathan’s transplant team decided that day that he needed to be relist for a new heart and lung, because fixing his pulmonary veins would likely cause more damage and re-stenosis was so great. So Jonathan was relisted, and from March till May Jonathan struggled with O2 and many other issues that went along with having Pulmonary vein stenosis. It finally got to a point where if the doctors did not at least try to reopen a few of his pulmonary veins Jonathan would die. So May 1, 2014 Jonathan went into surgery with the risk of coming back on ECMO, but Jonathan showed them what a strong boy his is and continues to be. The surgery was a success but caused reperfusion issues in his lungs and he needed to have trach.  So the end of May Jonathan received a trach. Since that time Jonathan has overcome many things like regaining weight, learning to walk again, but it’s been 7 months since the surgery,  and just last month during an echo Jonathan’s pulmonary vein gradients  showed high pressures again, just like before his surgery in May, and Jonathan is showing  other signs that his pulmonary veins are re-stenosising.  Besides this re-stenosis Jonathan is having other issue from being trached and on a lot of medication. About 4months ago we found out that Jonathan’s liver was in larger and he would need a triple transplant but God has other plans ... So we are Heading to Phoenix Children Hospital so we can be supported by family as Jonathan lives his life. 

So this is where Jonathan and our Family are right now. We have trust in Jonathan’s medical team and faith in God. Every day I pray I am able to have another day with Jonathan, and yes it’s a day by day thing, but I refuse to give up hope and the belief that a day by day cannot turn into a year by year.
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Organizer

Amanda Miranda 
Organizer
Jacksonville, FL
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