We have had 2 deaths in the heart community that I follow - I am sure there were many more that aren't in my facebook groups. One was Tin Man Flynn Holden http://tinmanflynn.blogspot.com/who was waiting for a heart. His father was always so upbeat and hilarious in his postings it was a joy to read his updates even when you knew times were tough - he always put such a brave and funny spin on what they were going through. He was a very tough little man and reading he had passed suddenly - on day 65 on the transplant list.... my heart broke for his family. Another was Brian. Both children I followed while I was pregnant or right after Macsen was born. 1/100 is born with a heart defect. There are so many children, so many families fighting to love their babies another day. It is so hard when one has just had enough and their little bodies give out. Iam praying for peace and strength for them in these impossible times.
Macsen's records have arrived at Boston and we have gotten an email that the surgeon, Dr Emani, is reviewing his echo. I don't forsee any drastic changes in the course of his treatment. I expect they will also recommend he move forward with the fontan, his 3rd open heart surgery, in 6 months - 1 yr. But just in case they see something different, something better... I had to ask. This 3rd surgery still leaves him with half a heart - it will off load the rest of the de-oxygenated blood from his lower body from his heart to be moved via a passive route to his lungs to get oxygen. Not a perfect system, not a cure, and a process that puts a lot of pressure on his liver and kidneys when the blood backs up. Still praying for a breakthrough in stem cells, in 3-d organ printing, in converting the ghost scaffolding of a pigs heart covered in his own stem cells into his very own new, perfect heart. And praying for him to grow. He hasn't in several months - not height or weight. Still stuck at 27 inches and 18 + lbs. By the next cardiology visit in March if he hasn't grown again we will have to see Endocrinology. I hope he grows. come on! Grow! I now add fractionated coconut oil (liquid) to his breastmilk but still no growth. And - despite the singing, dancing, and everything short of standing on my head - he is not actually eating very much. A few nibbles here and there. He loves to hold a croissant and take a tiny bite - but he always pushes it out with his tongue when it comes time to swallow - sigh. He did eat several bites of - all things- a coconut/salsa/peanut butter crock-pot dish. He loved the sauce as long as it was his daddy feeding him. And he'll drink anything from a cup as long as it's water :( No calories there but little dude LOVES water.
We have our dates for our next trip to CHOP set in March - just for a check up with his team up there, a developmental evaluation w/ CHOP's Neuro Cardiac Care program http://www.chop.edu/service/cardiac-center/our-services/neuro-cardiac-care.html, and follow up with an environmental study he is in. Should be a few days filled with tons of tests but hopefully we will get to see some of our family to help break it up. I hate to fly with Macsen - our last trip was a nightmare with every other person on the plane hacking up a lung in what I imagined the last moments of their life battling TB or swine flu - all with a fragile baby who cannot get sick. I was ready to come home and get legislation passed that mandated every sick person on a plane be required to wear a mask at the very least. Or invent an instant, conveniently collapsible, GERM REPELLING BUBBLE. It might work :)
Excited to hear from Boston - even if it is just that we are on the right path and to stay the course. They are the #1 heart center in the US and to know their top surgeons are looking at M's heart is so reassuring. We love CHOP and have total faith in his care there but I would not feel I had done everything I could for M if I didn't pursue this tiny, and very unlikely, chance that he may be eligible for the bi-ventricle repair.
Macsen's records have arrived at Boston and we have gotten an email that the surgeon, Dr Emani, is reviewing his echo. I don't forsee any drastic changes in the course of his treatment. I expect they will also recommend he move forward with the fontan, his 3rd open heart surgery, in 6 months - 1 yr. But just in case they see something different, something better... I had to ask. This 3rd surgery still leaves him with half a heart - it will off load the rest of the de-oxygenated blood from his lower body from his heart to be moved via a passive route to his lungs to get oxygen. Not a perfect system, not a cure, and a process that puts a lot of pressure on his liver and kidneys when the blood backs up. Still praying for a breakthrough in stem cells, in 3-d organ printing, in converting the ghost scaffolding of a pigs heart covered in his own stem cells into his very own new, perfect heart. And praying for him to grow. He hasn't in several months - not height or weight. Still stuck at 27 inches and 18 + lbs. By the next cardiology visit in March if he hasn't grown again we will have to see Endocrinology. I hope he grows. come on! Grow! I now add fractionated coconut oil (liquid) to his breastmilk but still no growth. And - despite the singing, dancing, and everything short of standing on my head - he is not actually eating very much. A few nibbles here and there. He loves to hold a croissant and take a tiny bite - but he always pushes it out with his tongue when it comes time to swallow - sigh. He did eat several bites of - all things- a coconut/salsa/peanut butter crock-pot dish. He loved the sauce as long as it was his daddy feeding him. And he'll drink anything from a cup as long as it's water :( No calories there but little dude LOVES water.
We have our dates for our next trip to CHOP set in March - just for a check up with his team up there, a developmental evaluation w/ CHOP's Neuro Cardiac Care program http://www.chop.edu/service/cardiac-center/our-services/neuro-cardiac-care.html, and follow up with an environmental study he is in. Should be a few days filled with tons of tests but hopefully we will get to see some of our family to help break it up. I hate to fly with Macsen - our last trip was a nightmare with every other person on the plane hacking up a lung in what I imagined the last moments of their life battling TB or swine flu - all with a fragile baby who cannot get sick. I was ready to come home and get legislation passed that mandated every sick person on a plane be required to wear a mask at the very least. Or invent an instant, conveniently collapsible, GERM REPELLING BUBBLE. It might work :)
Excited to hear from Boston - even if it is just that we are on the right path and to stay the course. They are the #1 heart center in the US and to know their top surgeons are looking at M's heart is so reassuring. We love CHOP and have total faith in his care there but I would not feel I had done everything I could for M if I didn't pursue this tiny, and very unlikely, chance that he may be eligible for the bi-ventricle repair.
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