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Wednesday, December 2, 2009

A day that's run the gamut

A late night at the end of a long day, so I (Art) will likely use this post on CaringBridg
e and SneAdventure:

What a great day. 1st, Josiah's bronch went well and his doctors said the airway is looking very good, so good that they removed the tube from his airway and did not replace it with a smaller tube. So, Josiah's airway is now tubeless. His doctors said the key is making it for 24 hours this way and we're approx. 14 hours of the way there, so things are looking good. However, they also again cautioned us that we are not yet out of the woods, and they'll know much more about how things are looking at the bronch on the 9th.

When Josiah was waking up after the procedure, it was pretty traumatic for him. We think it was mostly due to the new sensation of breathing without a trach and without the tube in his airway...also, it's likely his throat was sore. It took a long time to calm him down. Finally, I started readinng books to him. Then, I asked him what he wanted to do, expecting him to point at something, and he said "Puzzle." Immediately his eyes lit up and he got so excited he began waving his arms and kicking his legs, as he realized he could talk again. The rest of the day he was a different person...lots of talking, eating (Jello, 2 slices of cheese, some ham, some chocolate pudding) under the watchful eye of a feeding specialist, more walking, lots of smiling. I've included a picture of him eating with this post.

About his talking, it is VERY faint, like a whisper although he's not whispering...more difficult to understand him, but I think that's mostly because it's much less volume than before his surgery, but that could be due to sore airway, recent removal of the tube that's been there for a week, etc. We're hoping to hear the volume increase in the days ahead.

I am with him tonight, and thus far it's been pretty rough. Josiah cannot seem to get comfortable, is having to work hard to breathe, is receiving some supplemental oxygen, is crying some, and sounds very congested. They've already done a breathing treatment to open things up and hopefully that will help. This is the most fitful rest I've seen for him since we've been here. If you're still awake and read this tonight (a blessing of us being on the east coast), please pray for his body to calm down so he can get quality rest tonight. Thanks.

We will probably be moved from PICU to a special section for airway patients tomorrow morning. After that, it's more waiting until the bronch next Wednesday.

On the adoption front, we received another photo of the kids today along with some additional health information. The little girl has the most incredible smile in this photo...wish we could post now, but will have to wait until we pass court. Be assured we will share the photos and other information as soon as we can!

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