Wednesday, August 11, 2010

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



20 comments:

John Brown said...

I am so happy for you guys it is great to see him fighting strong. You have the continued prayers from the Corona fire dept. back home and know we are all following Daylon and your family through this blog.

John Brown

Patricia said...

it is awesome that he is fighting. I am super happy that he woke up for a bit. I will continue to pray for him and the family.

Bella's Blessings said...

Ali walked up to the computer, saw the pictures of Daylon in Brian's arms, and simply said, "Awesome." HALLELUJAH!!!! At last! Can't wait for you to hold him, too! How exciting!!! Congratulations on a huge day!

Anonymous said...

Such amazing and wonderful news. I am thrilled that you both got the chance to hold him. I cant imagine going through what you all have and not be able to really comfort your baby. After seeing the picture of Daylon's g-tube I promised not to complain about the minor irritation around my daughter Clara's g-tube (we have been fighting it for a couple of weeks). Poor Daylon. Thrilled, thrilled thrilled that he was looking around and making eye contact. Still praying in WI! Denise

Sara said...

An early Christmas gift! Hooray! Lots of love. Looking forward to seeing pictures with mommy soon!

Westover's said...

The look on Brian's face says it all! So happy for you!

Emily said...

amazing! I've been checking in every night, but this is my first post. What an incredible, horrible, amazing journey... Thank you for sharing it. You're in my thoughts!

The McLaughlins said...

I am so happy for you guys. FINALLY you get to hold your precious Daylon again. That is FANTASTIC! Keep up the good work Daylon, you're such a fighter. Lots of love and prayers still heading your way. We want a full recovery. Stay strong.

Take Care,
Amber McLaughlin,CA

Anonymous said...

Oh! Awesome! Your little boy has been through so much, he deserves the very best life ever. A piece of my heart will always be with Baby Daylon. I'm humbled at his strength and strong will. Congratulations to Mommy and Daddy for their faith, love and strength.

Go Daylon!!!

jardinera linda said...

So happy he's back!

Camille Artechi said...

Praise God!

Annalien said...

SO glad that Daylon is now steadily improving. Praying that he is back to his old self soon!

Linda said...

Love the video. Daylon looks wonderful considering what he has been through. So happy that you could hold him. There is nothing like holding your baby.
Will continue the prayers for your precious son. Keep the FAITH. God Is Good All The Time. Love Leah's Nana

lindsey said...

That video is AMAZING!!! It made me so happy this morning to see him awake. He is such a fighter. Thanks so much for sharing this journey with us. I pray for Daylon every night. I can't wait to see him get better and better. Praise be to God!!!

Aviles Family said...

YAY! Brian looks so happy! I can't imagine the feeling! I hope you get to hold him today and that he can be strong enough for his surgery. You guys are awesome, thanks for letting us be a part of this!

Angelique said...

Whoo hoo! Look at that GIANT baby! Go Daylon!

Chris said...

It is great to see pictures of you holding Daylon. Thank you for sharing your lives with us. I am continuing to pray for your family.

BRIAN AND BROOKE said...

Oh there is nothing like HOLDING your BABY!! I am sure you just took that 5 minutes in and loved every second!! I sure hope you get to keep holding him. He is such a big boy, when you see him on Brian's lap :) I hope it gets figures out about his G-tube...and his collapsed lung. I loved that video..he is AWAKE! I am sure he LOVED hearing his mommy's voice!! Praying for your little sweetheart.

Grandma Kris said...

Big SMILES for this great news! You get to HOLD HIM!!!!! He can SEE!!! Wonderful. Wonderful.

Mom to Many said...

Back from girls camp and so glad to see him awake!
Blessings!