Henry has made a lot of progress in the past several days. On Sunday, Sept. 29, he was extubated and seemed to be doing really well. Sunday night he was awake almost the entire night. He was cuing heavily and seemed only consoled by a pacifier and sweet water. He never took a pacifier before, but we were also able to either give him the breast or the bottle. They didn’t want him to feed orally with some of the meds he was on for fear of aspiration. During Monday morning rounds, they decided to let him go ahead and feed by mouth (a little), even though he still had the NJ tube in.  He sucked down about a half ounce in less than a minute. We didn’t want to give him more than that, but he seemed pretty satisfied.

His stats all looked good throughout the day, but a few times he started coughing heavily and even vomitted. The night went pretty well, but at around 4 a.m. (Tuesday morning), he had his first apnea episode. He basically stared straight ahead and stopped breathing. The nurse was able to bring him out of it with just a little encouragement. Then, at around 6:30 a.m. it happened again. This time, the doctor had to come in and bag him with an oxygen mask. He was fine for a little while, and then just before 8 a.m., he had a severe apnea episode. He stopped breathing, turned blue and even with the bag, the doctor was having a hard time getting his oxygen saturation back up.  The doctor then decided to reintubate him.

So … after I lost it, I called Dan and he left work right away to come up here. The doctor believes that his apnea is seizure-related and has nothing to do with his heart. Actually, from a cardio and respiratory standpoint the doctors are all still very pleased with his progress. They are going to start weaning him off some of the heart medicine today.

He’ll be having his first CT scan in about an hour and another EEG after that. A neurologist should be stopping by later this afternoon once all testing is done to see him. Needless to say, it’s been an overwhelming morning. It’s really hard to stay upbeat and positive when you see your baby turn blue. He’s looking good for now, and Dr. Ceithaml doesn’t think he’ll need the intubation much more than 24 hours this time. Long enough at least for neuro to come up with their conclusion and a course of action.

As always, continued happy thoughts and prayers are appreciated. We’ll be here at Camp Kruck if anyone wants to stop by …