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.

"Peek-a-Boo!"

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.