Sunday, December 19, 2010

Home sweet home was shortlived

Just as we were getting into the "routine" at home again, CF throws us another curveball. 

Luckily, I am agile.

After Sage went to school and enjoyed the Christmas party with his friends on Friday, he came home, no worse for wear. About 2 hours later, a small red rash popped up on his forearm, the arm his picc is in.  Over the next few hours the rash spread.  We though for sure a new detergent, cold weather= contact dermitis.  We re-washed all his clothes, blankets, gave him a good bath and held our breath.  The rash wasn't getting better. We called his Cf doc and she said it was probably a viral rash, but if it got any worse, don't hesitate to call back.

His whole body is like this, poor dude.  :o(
As a matter of fact, that night we had to do his IV treatment.  Just after we started his 4pm dose, he complained of "somthing's in my eye".  He rubbed it and cried of it hurting, so Daddy to the rescue, tried his best to flush out whatever it was.  It stopped bothering him, but the rash was  still growing worse.

7:30p IV's and his eyes bothered him again, then midnight IV's, the rash looked REALLY bad and his eyes were burning and itching unbearably, enough to wake him out of a dead sleep.  Right then we knew.  So, Louv took watch all night long so Sage could get one last good night sleep at home (and Mom too).

First thing in the morning, after a consult with Peds Pulmonary at UNC Chapel Hill, we took Sage to the ER locally, and he was immediately admitted to New Hanover Regional Children's Hospital in Wilmington.  They were really nice, and quickly ran a bunch of tests trying to rule out any crazy complications, with the thinking that he had a reaction to a medication that has been building in his body for the past 3 weeks.  Hmmmm.  I'm not sure it's adding up quite right. We'll see.  They stopped the IV Cefoxitin, thinking the Cephalosporin may very well be the culprit. 

That was 48+ hours ago.  Rash still 100%. Calming and flaring, itchy, swollen and red.

Sage does not want to play connect the spots.
So today, Sunday, is Louv's Birthday, which has been overshadowed by trying to figure out the mystery of the rash.....AND the Raven's Saints game.  Not to mention, both Louv and I went to the playoffs in our fantasy league and we are both it seems that next weekend we will be playing each other for the Superbowl in Fantasy.  Salt Water Dragons VS Fish Bone Gumbo.  Fitting  :-D

 Sage's Kidnmey's are still going downhill, which has now become a reasonable concern. The Doctors have added round the clock Benadryl which isn't helping a lick.  This lead them to add Zantac as a last ditch histamine blocker.  Normally oral steroids would be the order, but with an infection and a low grade fever, that is a last resort do to the suppressed immune system and risk of serious complications.  It couldn't just be easy, can it.

We are afraid that it may be the Amikacin antibiotic that is the culprit.  If that's the case, then we are in trouble because the abcessus (afb) infection we are fighting is very resistant and only has one known sensitivity...amikacin. This means that we may be in the hospital for his entire 6 week treatment...or he has to live with afb and try to fight cf when his lungs will deteriorate twice as fast as without afb.  I don't like those odds.  I don't like anything about this pile of crap. 
When the rash had calmed down
I don't like it Sam I am. But, I have faith that Sage might be Iron-Man...
Mom let him have an early Christmas gift...Iron Man Hand (it shoots!)

We did manage to have a bit of fun for Louv's Birthday, but if you ask him, he will never admit it.
here's proof:

The "goop" that is not allowed to come home from the hospital  lol

Havin fun with sis when the rash was "calm"
....To RED!  Way To Go Ellie!

 I also have to add that Ellie had a few life milestones that are definitely noteworthy!  She tested and went to graduation to get her Red belt in TaeKwonDo.
Ellie testing from Green......

And right after, came to see Sage.  Awwwww :o)

Ellie also made her first plate of sushi...all by herself!   

 And, if that wasn't enough, Mom and Ellie slipped away to the mall and Ellie got her ears pierced!  (Thank you Maw Maw for the Christmas money we used to do so :-)

So, as you can see, even though it's the holidays, Sage has afb, he is doing home IV's, has a rash and stuck in the hospital.....Life goes on, and still blesses us in some obvious and some not so obvious ways.  Maybe even because of CF disasters like this, it makes us appreciate each other and the small milestones of life just a little bit more.  I can only hope that I can share with Sage the appreciation and happiness in life,  that he has so selflessly given to us.  By the way, Happy Birthday Honey.  I don't want to divorce you today  ;o)  Your lucky the Raven's won.
xoxo  Mommy


  1. Happy Birthday, Jason. Danielle, we are ALL praying as hard as we can for all of you. I'm sure Sage is an Ironman. Just remember there are a LOT of kidneys in our family should Sage ever need one. We pee a whole lot, so we know they work good. Of course mine is VERY OLD! Luv you guys.

  2. Hello The Louviere Family!!

    This is Erin, the nurse that took care of Sage the past few days at New Hanover's Children Hospital. I wrote down this blog right before you guys got transfered to Chapel Hill. I am so glad I got this, sage really impacted me and I just feel in love with him, like im sure a lot of nurses do! My thoughts and prayers are with you guys during this hard time. Tell sage I already miss him and he really did put a smile on my face everytime I walked in the room. He made the past few days at work awesome for me! I will check this to keep updated with my little buddy. Thank you so much for treating me with respect and being such an awesome positive family. It really makes me realise how lucky I am to be a nurse! :) thank you for everything... oh and I have my snowflake hanging in my car!:) its beautiful!! Thank you again!
    -Erin (nurse from NHRMC) :) keep strong sage! and dont you ever take that smile off your face!!!

  3. I had no idea all of this was going are all being tested right now. Just when you think things are going great. Sage, Santa Claus comes to the hospital, too.

  4. Happy Birthday, Jason. hope it was a good one. sorry the Saints didn't bring a win on your birthday. James, Angela & girls

  5. Hey Sage..sorry to hear you are back in the hospital. Perhaps you will see your COOL NURSE guy again while you are there. I'm sure the entire nurse staff will be EXTRA nice to you this week since it's Christmas time. My 7 year old daughters where asking how to make snowflakes out of paper today and I said "wish Sage was here to teach us". You and your Mom make WAY TOO COOL snowflakes. Sending Christmas cheer from LA to you. Merry CHRISTmas, Sage. Angela & Girls