We have a happy, smiling baby today! And his numbers reflect it. They've started the weaning process from the nitric and we will hopefully be off by tomorrow morning. As long as he keeps his vitals stable, we should be able to try to move to his home vent shortly after that. After a trial there, we'll be homeward bound!!! YEA for home!
I woke this morning to his playing with his balloons again. He was having a great time. And the resident who examined him said this was the first time she'd seen him smile. I'm glad she got to see that. He's normally so happy. He did lose yet another IV. This time they weren't able to get another one in. We pray we don't need access, because let's just say that other access options are not a fun idea and leave it at that. For those who wonder, when I left his room he was sleeping and satting about 93% on 40% FiO2 (remember, the oxygen bled in through the vent) and only 5% nitric oxide (down from 20 originally). His heart rate is a little high for him, but still well within normal. Just not where he's usually resting.
He does need to cross a few bridges, but we're not anticipating trouble. He needs to finish weaning and be stable at his home oxygen settings. Right now, right this very minute, he can't do that. But with the improvement we've seen, everyone feels that Sunday morning MIGHT be a good goal. Please keep fingers crossed, prayers said, and good vibes coming. We've sure appreciated every one of them. It's what allows him to come home with us, instead of returning to his heavenly home.
In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, defied the odds, not only living, but thriving and loving his life. He passed away 13 years, 6 months and ten days after his birth. This is an effort to share his joy in his journey. Like the little purple pansy, he was tiny, but strong and still brightens his corner of the world.
I am so so happy to read this post! I am praying throughout the day for little Aaron's recovery! :)
ReplyDeleteI'm so happy! I can't imagine how frustrating and scary it is...So glad things are on the UP!
ReplyDeleteIt was great chatting with you today! I'm so glad you guys are that much closer to getting out of there. Keep me posted on how things are! We'll be sure to say hello if we go for a ride around the unit on Friday.
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