Monday, August 30, 2010

Day +67

Erin, Daylon's primary nurse, and Daylon playing

Today and yesterday haven't been too bad! Boring actually. Daylon is continuing to make baby steps forward. Yesterday they were able to get really close to weaning him off the Versed and Dilaudid!! He's now back on Ativan [it sounds like a step back but it's not. It like a long acting Versed (they're both from the Valium family) that needs to be given orally ever 6 hours instead of a drip (continuous by IV)] and Methadone ( a light sedative/narcotic that is used to help with withdrawl that's also given orally). They are being introduced to his body with the hope that in a couple days, the Versed and Dilaudid can be given the boot.  Let me introduce you to the rules of leaving this joint...or at least 5D:
  • You can not be on an IV drip. You can be on IV meds though, if they are only given periodically throughout the day...couple more day. Seriously, like two days.
  • No fever for 48 hours (they prefer you to be off antibiotics too)...he's workin' on it
  • There's no magic white cell count number, but they need to be strong enough to handle the outside world. Let's put it this way. You can't go in the hall until you're .5 for three consecutive days. ...check!
  • Dialysis only needed 5 days a week or less...gettin' closer! He's at 6 days a week!
  • The doctor and nurses feel like the parents are ready to take on the CRAZY daily medicine and dr. visits schedule...They seem to act like they think we're competent! :) I guess we'll find out!
  • No life support assistance...goin' on three weeks!
So, as you can see he's makin' progress! That reminds me... His BUN is at 14!!! It needs to be under 19 and his fell into the 60's a few weeks ago, and then just stayed there! This just basically means that is pee is starting to become productive pee, and get rid of the toxins in his body!
  Yesterday, during physical therapy Daylon impressed us all! Ta-dum!

Highlight of the Day: Look who's sitting all by himself!!
OK...he's done :)

 Apparently, that pooped him out because with the exception of a few moments when people were bothering him, he slept all day while I held him. I mean he really slept! He was dead to the world. He woke up at 7pm and was up until 3am. Yeah, um, his nights and days are a little off. :) If that's his biggest problem though, I'll take it!
Highlight of the Day: He started waving...again!

Today was sort of a busy day. First thing this morning (like I was still rubbing the sleep out of my eyes, first thing) Dr. Tolar stopped by in a surprise visit. He evaluated Daylon and told me that we were going to have to push back our 1 pm biopsy appointment until 3pm because of dialysis. While dialysis got set up, Brian and I traded out so I could get a shower. Remember my shopping trip to Target from a week ago? Well, the following day Keira threw up at Sam's club (what is with my kids and that place!) while they were shopping. Brian had to top me! :) Totally kidding! Anyway, I've been trapped here and Brian has been at home trapped with the kids. Three of the four ended up getting it, so it's been over a week. I've just made quick stops home to shower and leave (while the dialysis nurse watches Daylon) so we don't spread the bug to the baby. Well, today we made a nice couple hour trade off.  I feel like I've missed so much, being away from them! I loved being able to hang out with the kids for a few hours, while Brian tended to Daylon. Unfortunately, when we switched back, I learned that Daylon had been going crazy thrashing and moaning for the last hour. Several doctors came in to see him, but no one could figure out what was wrong. I, personally think he was tired of sitting in bed for 5 hours, plus he's not a fan of the masks that everyone wears. Either way, he stopped eventually. Dr. Tolar and I got to work removing the dressings shortly thereafter, and Daylon was just too wild and unreceptive to the sedation (shocker) to continue. We'll give the biopsies another go on Wed.
 After Dr. Tolar and his crew left, I spent the next 2 hours finishing his dressing change and then Daylon conked out. See. Pretty boring stuff.

Daylon and another member of our team: Nurse Sara!
I do want to thank everyone who has taken time out of their days to help us. One of my biggest faults, is that I'm a horrible at writing letters...which is why I post every other day when I mean to do it everyday. I've been meaning to write "thank you" notes to several people who've sent us mail lately. You know who you are, and we are so thankful and touched by your kindness. I will get around to those "thank you" notes, I promise, but in the mean time I want you to know we appreciate you.
  I'm going to leave you all with a poem Keira wrote for Daylon:
"  ' Remember when we got Daylon and they said he would die,
well they were WRONG ,
They didn't know that Daylon loves us and is strong'...and a dinosaur"
-Keira N. Edling

Sweet dreams.


Jess Edling said...

BEST. POEM. EVER. Brent and I have been laughing for the last 10 minutes about that one. We love you guys so much and miss you like crazy! So glad Big D is doing better. Great days had by all! Love ya!

Anonymous said...

Out of the mouth of babes!

She is too cute! (And smart) so glad Daylon is moving his way out of there and home with all his loved ones!

Praying always! *what kinds of things are you guys in need/want of? I've been wanting to send stuff... But do not know what! Also! Where do we send them to?

I'm from your hometown... So if you want anything from Corona let me know! (Not that this is a happening place or anything! LOL! Maybe some Miguels burrito's overnighted to you? Not sure how good that will be! :) have a wonderful day tomorrow! Can't wait for that little ROAR! So cute! :)

Shelley said...

What a great poem! Keira is right - he is a dinosaur, a pretty darn tough dinosaur too! So fun to hear about and see pictures of his progress. Sitting, playing, going outside...yay Daylon!!

We still pray for him, and for each of you as you continue on this journey. Thank you for sharing it with us.

Nancy said...

LOVE IT! Love all the progress and great news. And that poem! It made me tear up. Too sweet.

M. Teter said...

For the rest of his life Daylon will be nick named Daylon the dinosaur. Oh please don't let him become a professional wrestler!

Carla and Matilde said...

Just loved the poem. Wonderful Keira!

So good to read you! So good to see Daylon's improvements! SO happy for you guys.

Keeping you all in my prayers. God is good.

Carla, from Portugal

Kim M said...

Oh what an exciting post! Reading that you got to hold Daylon so long (we were praying about that while in ICU), him sitting up (amazing!) and seeing him wave (GO DAYLON!)!

God is amazing how He is working in the little (but BIG) things in your precious son's life! And to think you are actually looking at when you might leave 5D to go back to the RMH where all the kiddos will be there to stimulate him!!! WAHOO!!!!

While I continue to pray for Daylon's recovery, I am praising God for the progress he is making.

Mollie said...

That is an awesome poem, what a great sister! ;) I had a son, Dominic, with Junctional EB, Jan 26, 2004. When I was 15 yrs old. Only 6 yrs ago, there was nothing they could do for him, not even a skin graph would help. Dominic passed away at 2 months, at Loma Linda childrens hospital. To see that they have come so far with lil Daylon is just....all I have prayed for!!! To Daylon and your family God bless, you are all in my family and myself prayers!!!

Kim K. said...

I was so excited to see that he was sitting up. Your family truly amazes me. God knew what he was doing when he entrusted Daylon to you and your family. The poem was precious - I'd have it made into a sign or something for Daylon's wall. What a beautiful gift from sister to brother. The first thing I do when I get on the computer is check to see how Daylon and Anabella are doing. Love and prayers from Idaho.

The McLaughlins said...

That is an AWESOME poem! What a smart girl you have. I'm glad to hear you got to spend some time with the other kids today. I bet that was a nice treat for ALL of you. I'm glad to hear Daylon is doing so well. I'm excited for him to make a full recovery and realize that MIRACLE we have been praying so hard for. Stay strong.

Take Care,
Amber McLaughlin,CA

Angelique said...

Yay! Way to go Big Guy! What's with the masks everyone is wearing?

ANewKindOfPerfect said...

I love the poem! :) He is sure showing them what a strong dinosaur he is. I am so excited to read that he is doing so well. Love the eyebrows! ;)

Anonymous said...

So Great and What a Wonderful Blessing to see Baby Daylon doing better and progressing. He is amazing. Keira's poem was so cute and so sincere for her baby brother. Oh the Faith of a Child. There is so much love and caring. You have such beautiful children and they are really blessed to have such wonderful parents. You are amazingparents. YEAH DAYLON, GO DAYLON GO! Our thoughts and prayers are with Baby Daylon and the rest of the family. Take Care and God Bless.

Myrna & Dwight CA

Mom to Many said...

The amazing sitting Daylon!


Love the poem!! She is So cute!! Loves her brother SO much! I love the pictures of Daylon sitting up and waving! I cant believe the progress.... its all just so wonderful! In one of the pics when Daylon has a poudy face on cause he was done with sitting up... I just want to cuddle him! Too adorable! I bet you arms got tired from holding him all day when he was conked out sleeping away all day:) Big boy to hold ! I get a dead arm from holding my son for a long period of time ha ha
Well I am glad the kids got through the sickness and that you were able to see them . Boring days are good :) Cheering for our Daylon!!

Anonymous said...

So happy to hear the progress. I continue to pray for him constantly through out the day (and now for Bella too). I don't post often because I usually check your post on my blackberry and you can't post from it. But know some folks out here on the west coast who you've never met pray for you contantly. Our 17 month old knows to say "Amen" during our dinner prayer as soon as here hears "Daylon and Bella" because it means he can start chomping way - lol.

Elle's family said...

JOY!!! Oh it is so great to see him so improved!! I am really excited; he looks great and is doing so much.

Marybeth said...

We are so happy to read so much good news... Yay!!!! Thank you God, so glad your lilttle guy is such a tough fighter, and it sounds like on the road to getting out that joint. We are so happy to hear this, and we continue to look forward to even more good news. I love the way you write, and more importantly I love your pictures... What a great blog.. Thank you for sharing. We are praying for you and your family. WHat an inspiriation you are and a HERO to so many people. Your strength and courage are such a witness to the wonders of God....Stay strong HUGS
Marybeth & Sam
PS: thank you for your continued support with us all the while you have your own battles brewing... we are thankful!!!!

Emily said...

Wow!! Go Daylon!! I'm so impressed that he's already sitting up and waving!! That's wonderful progress =). I wouldn't like the masks either.. it's weird looking (but important, I know). Your little man is amazing. Thank you again for sharing his story with the world. I remember thinking, not that long ago, that you were going to lose him, and now I check in daily for some great, uplifting news!! Really, I come to your blog to feel better about life.. it always works! So, thank YOU. And that's an awesome poem, too-