Day +48: Big day!!

Hey Everyone! Daylon has had quite the crazy day! Ready? Buckle up!
So, it was Brian's night to spend the night and thankfully, Daylon was more comfortable last night. This morning in rounds the doctors came up with two new goals for today:
1. Wake Daylon up
2. (hold on to your hats for this one) Have Brian and I (or "mom" and "dad" as we are more commonly known around here) hold Daylon!!!!
Woo-hooo! FINALLY! It's been driving me nuts watching him be so scared and all I can do his hold his hand. He's a baby. Babies need to be held, ya know?
All of the bucking and wiggling has caused is gaping whole to become a ditch. A ditch with springs is what it seems like. The g-tube pops out, we drain it, put it back in, bandage the area and opps! 90 seconds later it's out again! I asked for Dr. Sulsman, who's the surgeon that has performed several surgeries on Daylon to be paged. He came up with his entourage and evaluated Daylon. He said that he needs to have surgery again to fix the damage that has been done to his stomach, then they'll sew up that spot and put in a new g/j-tube somewhere on his tummy. Poor, baby. The only problem is that he doesn't think Daylon is strong enough for the surgery just yet and he needs to figure out how they can perform the operation without a paralytic. If a paralytic is used then they would need to intubate him again, and well, that's not possible at the moment. He said he would talk to the BMT doctors and let me know tomorrow, when he can have surgery. For the time being a PA is going to come in and give it a temporary fix when they replace the j portion of the tube tomorrow.


These pictures are worth a thousand words!! Brian got to hold Daylon this morning (I was at RMH) for the first time in 6 weeks!! Look at how huge Daylon is on his lap! He's barely 13 months old! I think he's grown! I got to hold Daylon to for 5 minutes or so before we had to put him in bed again for his chest ultrasound. Speaking of, the ultrasound showed that Daylon's right lung is collapsed due to a clog. What's with the right side of his body?! The thought is if he we move him enough and stimulate some decent coughs he can dislodge the clog. Outside of that, he's breathing great! He's oxygen saturation level at this moment is 100% and his blood gases are coming back in average levels. Just goes to show you what a fighter he is!!
Dialysis has been a project today! Nothing has worked right with this machine or Daylon's lines. It's been an 8 hour project today to get a measly 400cc off. About an hour and a half in, they TPA ed his lines (put in a thinner to help clear up his line) and then let it sit for 45 minutes. During that time....

DAYLON WOKE UP!! I mean really woke up! He was looking around and relatively calm! You may have noticed I wrote, "looking around". Yep, he's not blind! He was making eye contact with Brian and I when we would speak to him and he even studied the nurse when she came at his lines. He was checkin' the dialysis machine out...it was great! He's by no-means his old self, but he's semi-coherent. I feel like we're slowly getting him back from this nightmare.

Daylon staring at his Daddy

Unfortunately, he started to get to get a little too wild after a half hour or so and they had to drug him to get through dialysis without setting off the alarms. Dialysis just ended and he's starting to wake up. I'm jumping at the chance to hold him! Sorry guys! I'm bailing! Thanks for all your prayers! We love you all!

if you get a minute check out this video of Daylon!

http://www.youtube.com/watch?v=MbJohHyTFOw