4/16/12 - Wow...what a rash!

Haylee's angry rash :(  but smiling through it all!

It looks much worse in person :(

Singing with some guys from the Songs for Kids Foundation (she was singing "You Belong With Me" by Taylor Swift)

Even though Haylee slept all afternoon yesterday, I still managed to get her to sleep by 11:30pm.  That seems late but not for someone who slept from 2:30-7pm!  She woke up this morning with the rash pictured above.  Amy, our nurse, and Kelly, one of the PAs, came by to look at Haylee because the rash got worse overnight.  It was all over her everywhere!  It looked very lacy and was worse on her upper body (face, ears, chest, back of neck, and arms) compared to her lower body.  It's also warm to the touch but she hasn't been running a fever with it.  I did notice that the pinpoint spots on her legs got brighter as the day went on and the spots began popping up on her feet.  It's raised in some areas (on her arms) and flat in most other areas.  Dermatology was called in and ultimately, they aren't sure what has caused the rash but since it doesn't bother her - it doesn't itch or burn - they don't want to do anything except let it run its course.  What they do think is that its drug related - something she's taking.  Since the anti-fungal medication she started 8 days ago is the only thing that she hasn't had before, they discontinued it and she will start an oral one in a few days.  They ruled out viral because she hasn't have a fever or any other symptoms to go with it.  They also mentioned it could be a reaction to the platelets but she started a rash before that and was pre-med for it, which is supposed to prevent reactions.  To be right here with her and see it makes me want to start itching everywhere.  It looks like it itches and is very uncomfortable, but she's been acting fine all day...as if she has no rash at all.  She's been running and playing and acting like normal Haylee.  I guess it bothers me more than anything.  I just feel so bad for her.  No one knows where it came from but everyone has a theory.  I know rashes are hard to diagnose and I'm okay with what they've told me, but it's just frustrating.  Here again, another one of those things I have no specific answer for...makes me CRAZY! 

Upon waking up this morning, I looked at her port and there was dried blood around it again.  Amy said sometimes kids are rough in their sleep (and Haylee is) and can sometimes stretch out the hole where the needle goes into the port, causing it to bleed some.  She also has the hematoma underneath that hasn't completely healed.  It was discussed during rounds and I was given the choice to either have her port

de-accessed for a few days to let the hematoma heal up some and draw labs from a finger prick or dressing changes 2-3 times a day to clean up the blood.  I talked to Haylee but ultimately chose to de-access her and let her port heal.  She's not happy about the finger prick but was thrilled about being free!  She didn't do great getting de-accessed but it wasn't the worst she's been.  Since she's been having such a hard time with the port lately and the accessing itself, I made 'Port Reward Chart' (my dad's idea).  She has to accomplish 4 things - staying calm, not looking while they access it, keeping her hands away from the site during the process, and not arguing with anyone trying to help.  She can get rewards from accomplishing 1 of them or all 4.  If she can do the access without Versed, she gets 2 rewards.  Eventually, she will have to do the access with no Versed, but we've got to do what we have to to get there. 

Two guys from the Songs For Kids Foundation came and sang songs with the kids in the lobby.  Haylee got up and sang a few songs - 'You Belong With Me' by Taylor Swift, 'The Climb' and 'Party in the USA' by Miley Cyrus.  She was AWESOME!!  They tried to get her to help them sing 'Lean On Me' but she didn't know the words. 

We played in the playroom for a little bit and had dinner and showers.  She took her pills, along with a Benadryl pill, and was out by 10pm. 

WBC - 1910

HGB - 10.8

Platelets - 151K

ANC - 20

SEGs - 1