to answer someone's question from the last post: When the staff here has hurt him, do they apologize. Honestly, mostly they come up with reasons why they had to do what they did and don't apologize. However, there have been a few that do.
I wrote the above yesterday....
This is from last night...
Two nights ago a nurse tugged too hard on Daylon's line and pulled the cuff on his line from under his skin, through the skin. There was screaming by Daylon and
Daylon woke up feeling better and for the first time since Saturday, played with toys. I even got to see tinsy crackes of his eyeball a couple times today. It was only for a half a second, but I was so happy! This morning, as Brian was gettting ready to leave the room for work, Daylon let out a playful yell and was smiling in his sleep. I was so excited to hear about that! TA-DUM! Improvement!
|Talking to Daddy on the phone after breakfast|
More good news? Ok.
Dr. Buchbinder is back (Hooray!!) and taking control of the whole lack of EB knowledge thing. He was really disappointed to hear what has gone on (he was out of town) and is fixing it. He spoke with infectious disease and they decided to get Daylon on oral antibiotics and not risk another surgery putting a new line in. His wants to get Daylon out of the hospital ASAP and away from blood pressure cuffs, twice a day complete body scans (which are wrecking his foot), thermometers, well intended nurses, etc. As long as he can go 24 hours w/o a fever (last one was 3am last night) he can fly the coup tomorrow! Yay!!
|When Daddy came by on his lunch break, Daylon was so happy he even did his little happy dance and gave a great big cuddly hug!|
You know that moment when you're with all your kids and your spouse you're just sitting around talking? I love that moment.