Wednesday, December 5, 2012

Day 6, More rash= no more picc

Quick update because Duck Dynasty Christmas Special is about to come on :-)  Gotta have my priorities straight.

Sage's rash spread and got worse.  It hurt and itched.  This prompted a myriad of specialists to weigh in on what they wanted to do next.  Opinions aree like ____, everybody's got one.
Sage's CF Doc (who we love) came in and sat down on the bed and she said:
 "What do you want to do." 
 Me: "pull the picc".  
Her: "you sure?", 
Me: "No... are you?"
Doc. G.: "No.... (smiles) Let's do it"
Me: (smiles)  "yup".
Her: (giggle)  "yup".

And so, we pulled out his central line 2 hours ago, in hopes that the rash will go down, despite giving him the same antibiotics orally. If he is having trouble with the PICC line itself, it's a double edged sword.  On one hand we may be able to use the every important list of IV Meds that are on his allergy list that he NEEDS.  On the other hand, you can't run those meds though a regular IV, so how do you give them? a  permanent port.  We are just not ready to go there yet.  Exploring the internet for "options" tonight, and I think I have come up with a few.  Outside of the box, as always.  Doctor G will get a kick out of special ordering central PICC lines off the internet....Yup (smiles).
In the meantime, we hope he doesn't need a different IV med because there is no IV sight anymore and would require another surgery to get a new one.

 In 24 hours we will know if Mom was right.  I hope she is as smart as she thinks she is.
What I do know is that we need to start ruling things out.  One by one. Make records, start getting some for sure answers.

If he starts getting better, we could be out of here by Friday.
If he the rash gets worse, or clinically his bloodwork shows internal struggles, 
then Mom will go with Plan B.  What's plan B?
I dunno.  But we always figure it out :-) Remember, that mom things she's smart.  CF will show her a thing or two.

Sage is not in pain anymore, and doing well.  His cough is 50% better, his PFT's are back up close to "normal", and for having CF, his lung function is crazy good. CRAZY unheard of good.

Doctor G reminded me today of something that is haunting me.
"He has Disease.  His cultures will never be clean again."
"It's about management, and making the very best of what we have, and you are doing that extremely well"

I just never prepared myself to actually hear the words that things will never be the same again.

Pain Ninjas.  They help when things get really bad.  They have ultimate weapons to help you fight the fight of your life, and win.   Hugs and prayers for my cousin.  Sage is passing on the pain Ninjas to do their duty and fight her evil nemesis.  xoxo

Monday, December 3, 2012

C608: Day 4, Crazy.

Today has been insane.
It started calm enough.  Had breakfast, Docs did rounds.  No info except some of Sage's cultures came back positive for gram positive normal flora, but huge quantities.  Normally they don't treat normal bacterias that are supposed to be there, but in this case the docs will consider it tomorrow.

Sage was asked to be a part of a hospital movie to help get grant funding for children's programs.  The studies will prevent kids from having to be stuck multiple times a day for necessary blood draws.  Sage HATES those.  Of course we said yes!  So Movie cameras, lights, equipment, and a staff all rolled up into 6C08 like gangbusters! It was lots of fun :-) Sage is a star <3 br="br">

THEN, he got asked to help paint the UNC cows that will be a semi-permanent part of the children's' hospital, then auctioned with the proceeds benefiting the Hospital School...which we LOVE!

THEN, he lost a tooth, the one next to the front on the right (your left)  Oh, I can hear the orthodontist now..... 

THEN,  after dinner....THIS.  Which may appear to be nothing, but is in fact the beginning of a rash starting on his PICC line arm.  It wasn't there 3 hours ago. And since we discovered it 2 hours ago, it has doubled in size. Ruling our contact dermatitis, I washed him up, changed his shirt.  Gave him a quick haircut (noticing his hair was in his eyes in the tooth pic above....I'm still a mom, hospital or not!).   Nurses will come in and check the progression or regression every 2 hours all night long.  Yes, we took the pic in the bathroom where the light is best.  Yes, that is our toilet.  Jealous?  LOL

But seriously, Progression is our game changer. Prayers tonight.

We decided to chill.  Eat some dessert, and admire Sage's Blue IV pole lights that Ellie gave him.  They are by far the coolest thing in the entire Children's hospital!  

So cool that we got in trouble by some hospital safety inspector, so the head nurse had to tell us to "hide them" during the day, until 5pm when those Grinches go home.  Ellie is awesome :-)
Love it.

Now, we wait.......

Sunday, December 2, 2012

Sunday, snowflakes

Day 3 in 6C08:  Uneventful.
No news is GREAT news!
We watched TV,  Sage got to go to the playroom, and played kickball all over the 6th floor, terrorizing the nurses in the hall.  The Raven's lost with 3 seconds left in the game with a Steeler's 42 yard field goal (Booo Hisss), Sage ate ALL day long, and his PICC site is starting to itch.  The antibiotics are making his heart "beat out of his chest, and make his body feel weird".  We took a nap because this antibiotic makes him seriously tired too, but that's a Mom bonus. Then we woke up, ate dinner, and made lots of paper snowflakes which now adorn our already festive room :-)

We should start getting Bronchoscopy culture results back tomorrow and Tuesday. If any more bugs grow out of those cultures, we will have to change or add antibiotics, which adds more time in patient with each new med they would add one at a time, with 3-5 days in between.  Tonight, Docs just started IV Benadryl,  to delay what they think is an inevitable IV reaction.  sigh.
Hoping for the best, preparing for the worst.
Hope is much stronger than preparation.
Today, life is good :-D
Pray.  xoxo

Saturday, December 1, 2012

New Floor, New Adventure. 6C08

The Changing of the Guard has occurred, so now is a good time to update.  First Installment in Chapter 6C08.

Backtrack: Sage has been coughing since the end of September.  After 4 rounds of multiple antibiotics, combo antibiotic coctails that gave him a bad allergic rash, and a flu-like illness, he's still coughing.  The Mrsa in his lungs has become resistant to one of the only oral antibiotics that could kill it.  This is what prompted our admission to UNC Children's hospital this time.  Funny how this goes in 365 day cycles.  We were here last year, and similiar timing the year before last.

I am starting to miss Christmas at home.  This year we got a real tree, and managed to get the lights up, and let Sage put the star on before we had to leave.  Hopefully Ellie and Louv will make the tree beautiful, before it dies.  Hopefully.  Turns out I am allergic to the damn thing anyway.  Gues we will be a fake tree family afterall.  But I digress.

Sage had a bronchoscopy on Friday, around 10am.  They saw some opaque secretions, which is a sign of something going on in there, but it didn't "look bad".
It never does.
The Bronch Doc did a full levage, when they clean out the inside of his lungs with salt water, then sucked all that nasty stuff out.  Then they let it grow on what must be 50 different petrie dishes, and see what happens.  No conclusive results yet, but we do know there are "gram positive rods" growing from the initial stain.  Those could be ANYTHING..... so it tells us nothing.  Real results from the fast growing bacteria will come in tomorrow, the other results will trickle in Monday and Tuesday.

Sage is allergic to Vancomycin, the main IV for MRSA, and it was part of the crazy DRESS reaction that almost turned out very very bad last time..... so we are trying a new one, Linezolid (or Zyvox) IV.  this one is every 8 hours, so even if we come home on this one, it will make my job a TON easier than the other options every 2-4 hours.  wwhheeww!  This is his 4th dose, and so far no rash, no bad side effects.  usually it takes 3 days for the bad stuff to start to happen.  so, we are enjoying the time we have feeling good.

So far, Sage got to go up to the playroom, eat everything in sight to his hearts content, got some homework done, and had good quality time with Dad.  For tomorrow, more playing, eating, homework, playroom, eating, medicines, eating, physical therapy, eating, and making Mom mad :-)

Mom's awesome dinner :-)

Sage's hospital room is a Christmas light show, including a tree and a Blue LED IV pole! Thanks Ellie, your the best!