We learned at our last cardiology appointment on January 7th that Jerry will at some point need a heart transplant. I write this as kind of another person because accepting this as his mommy is just impossible. We have so many questions and are still trying to digest this so there is little more I can write. Please understand that if you saw Jerry you would not think this could be true. He seems pretty typical from the outside. He does have periods of being out of breath and has lots of trouble recovering from common viruses. Briefly I will just say his condition now is related to the fact that his heart defect was originally missed as an infant and there is scar tissue that is not likely to resolve as we hoped. His heart does not relax and fill properly causing diastolic dysfunction. His lungs are possibly damming up with what should go to his heart intermittently. The illness Jerry has had over the fall and winter that we thought were not impacting his heart probably were and each illness takes a toll. There are no children to compare Jerry too. Diastolic dysfunction is mostly a condition of older people with long term undetected high blood pressure and older people who have had several heart attacks.
We know we can get through this with all of the blessings we have had and with our faith in God's plan. Our little Jerry is sweet, funny, tough and has a lot of normal 2 year old attitude. We love him so much and will try to laugh more, sing more (he loves us to sing and dance with him every time the Mickey Mouse show comes on.....how we tire of this....but it's one joy we can give him now), and play more. More than anything he loves Isaac. It is Isaac he wants to hold him when he gets hurt (even if Isaac caused it!!), and Isaac he wants when he first wakes up.
More later as we learn more and get questions answered. Lots of photos to put on when time allows.
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My heart goes out to you. My baby is due for a heart transplant within the next 6 months having waited over a year. But my baby is 35 years old and has a 6 year old daughter that I'm just praying he continues to raise. I also talk about the situation in the third person as if it is happening to someone else's family in order to cope. My prayers are with you.
ReplyDeleteHello there! I am Jen O'Reilly's sister. I was thinking of you and your family recently and came across your blog again. Drew had Open Heart Surgery in 2005 to close an Atrial Septal Defect that kept getting bigger. He too had a hard time with common colds, vaccinations, etc. He would also get tired so easily. I was writing to recommend an excellent pediatric cardiologist to you. Dr. Ziyad Hijazi-Rush Pres. St. Luke's in Chicago. 312-942-8941. Don't hesistate to email if you have any questions. My thoughts and prayers continue to be with you and your family. Kim Gudmunson
ReplyDeleteSue.....I am in disbelief as I think you still are. Thinking of you and your little "crazy-haired" man. I am at a loss for words, Sue. Sorry we haven't seen you in so long and we will pray for Jerry and your family.
ReplyDeleteGod's Blessings upon you,
Julie Paisley and family
thanks for keeping us updated....my heart is breaking right now for you and Jerry....but, God DOES have a plan and trusting in Him is one of the hardest things I've had to learn in life -- and continue to learn in life. Praying for your strength, praying for strength for Jerry, praying for LOTS of giggles and smiles and dancing!!! :)
ReplyDeleteHi Sue, Just saw your post today on CCF and was shocked to hear your news. Wanted to let you know that I'm thinking about you. Feel free to shoot me an email anytime. I totally know how you feel.... your child looks fine and seems pretty healthy... how can they possible need a heart transplant?
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