Dr. Oren did catch me before I left today and said that he has been pleased with Oakes since his OR trip. The Pulmonology team had a conference yesterday and discussed Oakes. Everyone is now on board with the biodegradable stents. The stents are not FDA approved so this will take some time to actually get the stents. The FDA will be involved, Children's will have all kinds of hoops to jump through, we will have to figure out the insurance piece, and then we will coordinate to have this British surgeon visit St. Louis Children's Hospital. Pretty amazing. Dr. Oren wasn't sure how long this would take, possibly months he suggested. So while we wait, Oakes will continue to have balloon dilations as needed.
I just called Oakes' room to get an status report and his nurse was so excited to share that he had just been belly laughing at her. What a week!!
No big plans for any of the Ortyls this weekend. Looking to keep things boring.
Lots of love to all of our friends!
XOXO
PS: I don't know how I almost forgot this. An article was published about our family in a local St. Louis paper today. Large color photo and all. Pretty amazing....tells Oakes story, touches on the Mighty Oakes Heart Foundation as well as the thoughts and wishes of our family.
Enjoy!
Becky, thank you so much for keeping us informed about Oakes. Please know that ALL of the Laws are closely following the Ortyl's story. Thank you for sharing all the news. We realize it has to be tough to share the news when it's bad, but we really do care and we're there with you. We love you guys very much!
ReplyDelete-- Mickey
So glad to hear things are looking up and up! Amazing, Mighty Oakes, affecting medical procedure on a national level. Sending my deep breaths your way and tugging on those heartstrings.
ReplyDeleteLove, always, from your MI family
Kim
Amazing. He is in deed mighty!
ReplyDelete