Henry had a great two surprising steps forward kind of day today! The Intensivist on staff today decided that we needed some definitive perimeters for what Henry's lungs could tolerate in order to help decide what our next steps would be re: the diaphragm issue, possible bronchomalacia, ect. So, he discontinued the continuous BiPAP starting at around 2:00 this afternoon, and our guy has been off ever since:) He does continue to "pull" some in his chest when he breathes and some of his labs/blood gases reflect he is struggling a bit, but overall this was a very positive accomplishment. And a little challenging for our providers as I think they assumed that this would indicate the immediate need for re-intubation... stubborn little man likes to keep us all on our toes:)
So, we're continuing to learn what Henry is capable of and will go with what his symptoms tell us as far as future treatment. We're not out of the woods yet, but Henry just took a big step! He continues to get breathing treatment which consist of 15 minutes of BiPAP every three hours for respiratory help. He has been a little restless tonight and continues to struggle with withdraw- hence the late post- but we're trying to keep him comfortable. In the meantime we're getting some wonderful snuggle time with him and starting to see some of his personality peek through as the sedation wears off. Henry clapped after getting his temperature taken and if there's one thing that this boys knows about, it's how to get positive reinforcement:) Also, the "kiki" (binki) has returned and is providing some wonderful comfort for our guy (see below pic:). He hasn't said "oh no, kiki!" after throwing the binki on the floor yet, but I'm sure this is right around the corner:)
Thanks again for all your thoughts/prayers- Henry continues to amaze us with his strength everyday and I know they all contribute to his progress!
Much love,
K&J
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