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!

Monday, February 13, 2012

5C17, The CICC Palace

Midnight of day 7 is the best I can do.  My sincere apologies that this is the first blog update.  All I have had time for is the bathroom, and a quick facebook post.  Why you may ask? Because Sage is "restricted".  Not punished......(well, that's not entirely true, he's been punished 3 times since we were admitted).  Hospital restrictions include " Contact Precautions" which means you have to wear a special gown, mask and gloves to walk in or out of our room for anything....And the worst for Sage is now "Droplet Restriction".  This means you have one of the short list of nasty bugs that prevent you from leaving your room for anything.  No exercise, No Physical Therapy, No Playroom, No walking, No gift shop.  NOTHING, No WAY, No HOW, No, no NO.

Essentially this means we are trapped, and I have to entertain Sage for 15 hours a day on a zero budget, with limited supplies.  This has proved exhausting.
Even as I type this entry, so far Sage needed : To unplug, replug, and unplug again his IV machine....To empty his "pee jar" (yes, measuring pee is NOT on my list of stuff to do this week but here it is anyway)....fix glitter messes, clean a spilled water, clean water inside the marker, untangle IV line to get out of bed, make a shake, clean up spilled shake, Give him crackers, clean cracker crumbs out of bed, and in a minute, I will have to measure pee and plug his IV machine back in, fix covers, and tuck him back into hospital bed.....for the 6th 12:15am.
Are you tired just reading it?  yeah.  I know.
Now you see why this is day 7, and today I unfairly yelled at my husband for 25 minutes about something he had nothing to do with, just to let out the dogs of war on someone else other than Sage.
Consider this your public apology.
Ohhh, and by the way,
Happy Valentine's Day Louv.  I love you.  
Yes.... still :-)

On to Sage.  His Bronchoscopy was Tuesday. Picc line was placed without much trouble or bloody mess like last time, so that was great news. They admitted us to a Palace Room With A View, 5C17...over in the "kick".  The Children's Intensive  Cardiac Care (CICC) unit.  Why,? Because all the CF and Cancer beds on floor 5 Childrens were full.  That's depressing.  But, lucky for us, around the corner, the CICC has HUGE rooms with an outside view that is NOT a rooftop decorated with iron sculptures all dedicated to kids who are now angels.  Happy and Sad at the same time, but it is what it is.  So, our kick room is about 10 sq ft. bigger than the other rooms...which made me suspicious right off the bat. Right then I kinda knew the admitting nurses expect Sage for an extended stay,  rather than the usual 3 days in and back home on IV's.  No such luck.

So, Sage's CF Doc...Dr. G started him on of the only drugs that will treat Sage's resistant Staph.  2 days into treatment up pops a rash that looks mysteriously similar to the "DRESS rash" that he developed with the AFB treatment a year before.  At that point, I knew for sure we were in for a longer haul than anticipated.  Kick into Plan C, where Louv has to play the role of Head Girl; Scout Leader and handle all of cookie sales, GS Cookie Booths, all my troop parents, paperwork, money, inventory....of, and the girls in their meetings too.  Good Luck With That!!!

The Vanc. and rash got worse over 4 days, Sage got a BAD stomach bug, 103 fever, vomiting and all kinds of nasty.  It's nothing short of a miracle that I didn't catch it in such confined spaces.  The Rash spread from his picc arm around the line site, to his upper body, left torso, and then to his left arm.  His fever finally broke after almost 3 days of no eating and his body constantly expelling fluids from every orifice.  eewww.  Then yesterday (Sunday) the head allergy and immunology Doc came in and said.  We gotta stop this med,  before he goes into organ failure again.  I said, "Good Idea.  Can we do that now?"  He said Yes, turned around and pulled the plug on Sage's IV.  My kinda guy.  No team of discussion, no consultation with other departments, no talking with lab, or nurses.....just pull the plug.

Easier said and done.  Now what?  That now we are to the  morning on day 7.
His bronchoscopy results are still pending with the only information being " gram negative rods detected".
1. If it was a really bad CF standard bug, they would have found it within 3 days. They test for those first.
2. If it is a rare gram negative bug, it takes a long time to figure out what it is. Pseudonomas has 3 brothers that are similiar but different, and are hard to ID because it's like the 562nd thing they test for.
3. Some rare bugs don't have medicines to get rid of them.
4. Reality: Sage has always not followed the norm.  It is genetic. 

We will know Wednesday morning what is growing, and pray to god it has a cure.
 I don't want this admission to be a game changer.  Please, not yet.  Please.....Not at 7 years old. Not now.  Karma, you owe me one....or a million.  I'd like to cash in all my chips right now if you can do me this solid.

Sage just pulled out his 5th lost baby tooth, quick break to find the tooth-fairy a container, some surgical tape to seal it....clean up the blood....clean up Sage, stop the bleeding, unravel his IV line again....empty the pee bucket, record pee, plug in IV pump, smell hands to check that he used soap, record poo, give medications, tuck him into bed for the 6th time, at 12:40am.  Yeah, he's gonna hate me when O wake him up for Doctors rounds at 7:30 am. I will be the evil mother and he will yell backtalk phrases to me in front of 8 doctors 4 interns and 2 shift nurses.  I will punish him, he will go back to sleep, I will eat cold breakfast that was supposed to be hot and consumed before all the morning drama.  Mom will suck it up, stick to a restriction even in a one room space and on Valentime's Day,  because even though he has CF and in the hospital, we still have some basic truths to follow.  The most important of which is 'don't yell  or throw stuffed animals at the head of the hand that empties your pee bottle'....Say Please and Thank You to everyone unless you are in pain or vomiting....and anything that falls on the floor needs hand sanitizer.  These are Non- Negotiables.

After 12 hours of consultation Dr. G took a stand. You go, Dr. G. She put Sage on an Oral antibiotic that covers lots of Gram negative bacterias (broad spectrum), and we hang tight and wait to see what the devil is growing Wed am,  and plan to start whatever plan of attack we can towards a rare bug that is yet to be identified.  sigh.
Now, we wait.
Now at 12:50am Sage wants a bowl of macaroni and cheese.  He is using the " you will be sorry for not making me this macaroni when I DIE because you didn't feed me macaroni and cheese right NOW".
OH REALLY?....Mom, are you listening to me?  ...No Sage, I am trying not to listen to that because it was all  nasty backtalk..... I love you buddy, go to sleep.....FINE, (under his breath....I'll just starve to death).  You won't starve in 4 hours.  I promise.  Goodnight.....(silence)

Yup, tomorrow should be very interesting. Plan is to wake the beast, stick with oral meds for 24 hours.  Let the rash go down, try to get Sage off some of these restrictions so he is a happier kid ....

Oh geez.  He literally just pages his night nurse to make him macaroni and cheese, because he refused to say please to Mom.....She comes in, and he throws 5 stuffed animals at my head and I am the worst mommy in the world.
Yup, he did.
Yup, I know.

I am the worst because when you are on IV's your mouth doesn't make the "P" or "S" sound.
Your mouth must not be able to make the p or s sound because if it could,  it would Say Sorry...and Please.
You just embarrassed yourself in front of your nurse with your behavior, AND the nurse isn't going to help you, so now what?

Good question.  1:09 am and as soon as he says Sorry and Please, Ill be making Macaroni and Cheese, cleaning up said snack, and tucking him back into bed,  for the 7th time.
Why?  Because I am the worst mom on the face of the planet.  That's why  :-)

Happy Valentine's Day <3
( he just called the nurse and had to apologize for throwing a fit in front of her.  Then he had to apologize to me...and now I need to find a plate and a fork.)

xoxo, Mommy
2:05 am and tucking my Sage into bed for the 8th time, with a full tummy.