Hi Friends and Family,
So, Jaime has officially spent 30 days in the RCNIC. Today, he lost his Nitric Oxide and the machine to go with it. His echo was unchanged in the way of his pulmonary hypertension and he also moved from Pod D to Pod C. I'm convinced that we were "evicted" because we've met our 30 day mark..HA! No, actually it was because there were two infected babies in the Pod and with Jaime being post-op, the drs. didn't want to take any risks.
While today was supposed to be Jaime's big day, it wasn't. It sounds like tomorrow he will have all sorts of things happening...that is in a perfect world. If I've learned anything from this experience, it's that you can have no expectations. Honestly, Tom and I are just happy to be walking into the RCNIC to see our little guy everyday, no matter how long it takes to get him stable!
Tomorrow (Saturday), Jaime's tentative plan is to wean his Morphine drip and Versed, he'll have his foley catheter removed, will be extubated and will start feeds.
Today, when Jaime was transferred the Pod next door, ironically the same Pod as Carter, the R.T. decided not to bag Jaime for the trip over and thought she'd see how well he'd breathe on his own with the tube still in, well, he failed miserably as he didn't breathe at all and she ended up bagging him anyway. Bummer! So, as I said, no one really knows what will happen. In Jaime's World, HE'S the one running the show...just don't tell the drs. that! LOL
Tonight he was wide awake for hours! He's was smiling and making funny noses over his vent tube, "honk." Overall, he's more alert!
Tom went back to Cleveland for the Hemophilia Black and Blue Ball, he said it was good to be home and that it was GREAT to see all of the guys in the band! Titi came down to visit, she's fast asleep now, as is Jared and Jaime (he just fell asleep at 1:00 A.M.). I'm heading that way myself.
Have a nice weekend,
Sheryl
He is moving at his own rate and that is okay - they sometimes need time. Also remember - he has had the vent all along - he never had to breathe before ;-). Jaime is doing really well and so is his amazing family!
ReplyDeleteWith thoughts, prayers and Lung Function chants!
Elizabeth
While I realize EB is the least of his troubles at this point, I feel obligated to let you know that when his foley comes out and he is extubated EB could become a BIG issues. there is potential for internal blistering and involvement is ALL FORMS OF EB. All his tubes could be irritating to his skin in once removed those areas could swell shut. the urethra could close shut but the airway is the biggest concern. Those with EB who have airway issues usually have a blister that pops and the skin that is shed can lodge in their airway. Usually a tracheotomy is required by that point. This may not happen with Jaime, but I wanted you to be aware in case something like this does and no one had mentioned this to you before. I don't want to worry you anymore than you already are, but the majority of EB parents like to know what is possible with EB than be blindsided by it!
ReplyDeleteI have a website about EB www.garrettshouse.org if you or any of your readers want to learn more about EB or how EB affects my life.
Sheryl,
ReplyDeleteRemember, it's all about Jaime!
xoxo,
Jeanie & Ryan
Sheryl,
ReplyDeleteRemember Jaime is a SUPERSTAR in the scheme of CDH. See you soon.
Bev