We received our invitation to the ecmo survivors holiday party at Johns Hopkins. From what we have heard, it is a great event and really wonderful to see all of these happy, healthy children running around, when they were once so sick. Despite some of our current complications and frustrations with not being real close to leaving the hospital, it really is a miracle that Lalo is here with us. I'm not sure if we ever really wrote the specifics on here, but we have typically heard of Ecmo survival rates at 50% and this site lists them at closer to 30% for cdh babies.
http://www.cdhrainbows.org/ECMO.html. It will also be a great opportunity to see some of our doctors and respiratory therapists from the picu.
Lalo is doing pretty good. They are continuing to gradually increase his feeds and decrease his narcotics. They have also completely discontinued one of his diuretics. He was also spotted smiling at his Nana today, might have been all the singing and peekaboo. Not to mention the cool new sheets one of his favorite nurses, Lana, bought for him!
Sent from my iPhone
2 comments:
I'm really bummed that we won't be able to make it to the ECMO party this year! Jack is going to visit my parents. Have a great time. I hope we'll see you at the party next year!
awww!!! a smile!!! that is great!!! that shows that he is developing just fine. he is aware and happy to see his family. this is such great news!!! he really does look like a "frank!" i am so happy to hear your lifted spirits. lalo is such a miracle, you are right. those statustics are no joke and it is AMAZING that he is here for you to tell all of these stories about. he is a real fighter. love, katie ps happy thanksgiving
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