In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, is defying the odds and not only living, but thriving and loving his life. This is an effort to share his joy in his journey. Like the little purple pansy, he is tiny, but strong and brightens his corner of the world. If you'd like to see more pictures and his story from April 2010 to March 2011, go to Http://www.carepages.com/carepages/GiftfromHeaven
We just got home yesterday afternoon. Aaron did pretty well during the evening, 1-2 desats with some plugging, nothing abnormal. When we went to bed he was at upper end of baseline oxygen at about 3 l/m. I got up to find 6 l/m (The nurse didn't get me up???) and was told he spent the night between 4-8, once @ 10!! I watched for about 10 min & that was enough when he went to 8 l/m, so I called EMS. They came in and he continued to drop, once he was way down, although I'm not sure how far because his wave pattern on his monitor was almost non-existent. At that point we took him off he ventilator and started bagging him with 100% oxygen. Now we're in the ED & he's looking really good on his baseline oxygen, but white blood count is really high. X-ray, blood gas are fairly okay. Because we don't live around the corner, and he's so complex, they're going to keep him for observation.
I half think his concentrator was malfunctioning even though it appears to be working normally (no alarms etc). I called our home equipment company for a new one to be delivered. But this back & forth is killing me & I'm starting to wonder if he may be declining. When he's good, he looks great, but our admits are getting closer & more frequent. Any ideas? Please pray for us, all of us.