hospital update

Daylon is still in the hospital. Dr. Tolar has gotten involved in his care here at CHOC and they've run additional tests to check for infections in other areas to go along with the blood infection. So far, chest x ray= no pneumonia, echocardiogram= blood infection has not spread to his heart, no RSV, no MRSA, along with no other signs of half a dozen other problems. They drew blood from his arm again yesterday and that came back negative (so far) for bacteria so it looks like the blood infection may be clearing up, however, his Hickman is test positive faster than ever. His temp is up to 104.7 yesterday and after two fever reducers dropped to 102.5 an 1 1/2 hrs later. Meanwhile, I'm about to have a nervous breakdown from the stress of the infection and possibility of losing Daylon and the fear of being here and the continual harm that occurs to him. We got Tanya Kamka (a NICU nurse who took an interest in Daylon and Bella and is trying to raise EB awareness within the hospital) to come down and pass out the information she gathered on the disease. I think that the more people are reading over it, the more they understand that this disease isn't a "rash" as they've been calling it. Please pray for Daylon that he'll get better soon and we can go home. We miss the other kiddos too. His four siblings chaos always perks him up. :)

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 yelling stern talking to by me. Well tonight, Daylon was sleeping and his IV alarm started beeping. His nurse came in to check it. I figured the syringe was empty and listening to Caleb talking away on the phone. When she started checking the line for air, I lifted his shirt to check for a kink in the line and saw that his Hickman had fallen out!!! Normally there would be some stitches to close the hole, but since his skin still can't hold a stitch, they passed on it. I held pressure for 20 minutes or so and then dressed it with sterile bandages. We'll see what the doctors say tomorrow.

TODAY...
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!

 He will be SO much happier at home! Heck, I'll be happier to be home! My neck and back are killing me from these stupid chair beds plus I miss my kids like crazy! I'm acting like a pregnant woman over here (no offense, pregnant moms =D ), crying everytime I talk to them...or pathetically...even when I hear stories about what they've done this week. I've got to get it together over here! LOL!
  You know that moment when you're with all your kids and your spouse you're just sitting around talking? I love that moment.