Saturday, August 28, 2010

Day +64

Who's that handsome devil!
The last two days have been pretty nuts. Daylon has slept no more than 20 minutes at a time, and has moaned and thrashed almost every waking moment. I am only able to calm him for a minute or two, until he grows tired of my efforts and starts complaining. The doctors have no clue what is going on. There was fresh blood draining from his tube Thurs. night for a few minutes, but then it stopped. This morning there was this dusty sludge around his g-tube site and clogging up the actual g-tube. A GI doc. came up and said that it's nothing too concerning, but an x-ray would be done to check the j portion of the tube. The results show that it's in the same location it was placed in, so that's not his problem. He hasn't had a fever since they started Ethanol locking his lines at night. Boy am I glad we have a problem solver like Dr. Tolar on our side! He thinks part of the issue post dialysis is also allergy, so he's looking into it. Hallelujah! :) Daylon's potassium has been dangerously high, so there's no backing off on dialysis.

   It's been 48 hrs and his skin looks great! I can't even believe this is the same kid! I'm so stoked! The bottoms of his feet are still missing several layers of skin and his toes and the surrounding area have a yellow/green look to them from infection (staph on the left and pseudomonas on the right). The infections are starting to clear up though. His feet are sore from the dialysis blood pressure cuff, so until dialysis stops, they'll probably still be there.

HIGHLIGHT of TODAY:  Daylon held up his head!!

Daylon and his nurse, Kim. He hardly even looks like the same kid! His face is so full now from the steroids, not to mention the CSA facial hair! A mustache at 13 months! He's lucky he's so dang cute!
 It's 2:30 am and I'm exhausted. I'm sorry this is rushed but I need sleep. Thank you all for being so wonderful. You give us just the boosts we need! More tomorrow! Sweet dreams!
PS- Daylon's primary nurse, Erin is back on tonight! Yay! It's the first time we've had her since he's been intubated!

16 comments:

theitaliandyes said...

You guys are amazing! Don't forget He is with you (Psalm 91)!
Just wanted you to know that we are praying for all of you over here in Italy too!

Pati @ A Crafty Escape said...

What a cutie pie... hope you get some rest!

Sara said...

That last picture is beautiful. He looks great! Go Daylon!

Mom to Many said...

Precious baby. Thanks for answering my question about his feet.
I'll pray for your sanity to keep holding. You are up against a rigorous time for sure.
Slow as it goes so much good is happening here.

Anonymous said...

His skin....Looks Amazing!!

jess said...

HIS SKIN LOOKS AMAZING!!!! Hang in there little guy, you are on the right track!

Anonymous said...

I love reading your updates everyday, and have never met you guys. I can't wait for the day Daylon is back to his old self...please keep posting pictures, that is the best part :)

Linda said...

Oh Jenn: Daylon's skin looks wonderful. You guys must be so happy. Thank you so much for letting us go on this journey with your precious son, and thanks for the updates when you probably just want to crash. We appreciate all you do for us. Thanks so much. God Bless!! Love Leah's Nana

Anonymous said...

I just lined into your story from Jonah's. I know that you see him everyday but for someone who is seeing this all for the first time...WOW that skin looks GREAT!!! i see miracels everyday as a NICU nurse and wellyour son is a "holding his head up" miracel. Lots of love to you all.

john Brown said...

I am excited Daylon is looking great and holding up his head is awesome! Keep up the good fight- John Brown

Corona Fire

Anonymous said...

Wow...Way to Go Super Daylon. Next we need to get you a super cape because you sure are taking to those X-men cells. God is good. So wonderful to see Daylon's progress. Can't wait to see the other amazing things you will acomplish sweet boy. I pray for a restful and peaceful night. Sweet dreams. xxoo

BRIAN AND BROOKE said...

Hallelujah! Thanks goodness Dr Tolar is checking it out! Thats all you were asking for! Glad he sees that it could be a possibility! Yay! I am praying it gets figured out soon. Poor Daylon has had a few rough days! I bet you have too!
His skin is just getting better and better!!! He is such a big boy....... I am so happy to see he was holding his head up!He is moving forward everyday! He is such a MIRACLE!!
Mustache or not he is such a CUTIE!!

Glad you liked the Charts..... They really helped me for far Lana actually ate ALL of her dinner!

Good night get some rest!

Mom to Many said...

I checked in again and my son walked by and said, "Hey he is sitting up." We are so happy things are going so well.

Anonymous said...

Wonderful, I have goosebumps and it is hot here. I am so tickled Daylon looks great. I am praying and I really believe your son is going to be just fine. Tell Daylon he made Janet from CT smile.

Katherine @ Grass Stains said...

His skin looks AMAZING! What a blessing. I just read the most recent post, too, with all the "wins." Just a great day!

Gretchen said...

This little guy is such a champ! Thanks for keeping us posted and you are always in our prayers.