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.
Pray.

 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

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.......
xoxo

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

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 :-)

goofballs

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!

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 time...at 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 Vancamycin...one 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.
What?
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.

The rose

Today, The glass is FULL, for sure.
Despite the tribulations of sending Ellie to her father's for the week....
Despite having to basically tell my lawyer I am firing him for incompetence....
Despite all the crap that has gone on today, I finally broke down and listened to my husband.  And you know what... (he was right).  I should have read his monkeyshine blog sooner.  It reminded me that I should be playing tag in the outfield  :-)
He had mentioned something that stuck.

"Why bother planting the rose, when you know it will die anyway"  In his usual end of days point of view.  And I thought about it, and realized...
.....for the smell of course.  For the simple joy of looking at something so perfect, in all it's imperfect beauty.  To smile when you see it, even if a thorn pricked your finger.
To be sad when it starts to wither, and wish it could be vibrant once more.
To replace the water and cut the end to try your best to hold off the inevitable.
Then to wake up one morning and to see that it has died...
....and to truly miss it, and all the happiness it brought.
To appreciate the rose and enjoy it every second of every day that it is here on earth.
That's why I plant them.
That's why I love to linger and enjoy every minute.
That's why I worry about Sage for weeks on end, seemingly holding my breath for months.
That's why I keep fighting...
Hoping,
Dreaming,
Loving.
That's why I plant roses.
Because I believe that they do live forever, in our hearts.

And then the call came.  The piercing ring through my moment of reflection.
We don't answer the phone anymore because of all the Dr's, and bill people that call for Doctors, and bill people for accounts of doctors.... so I was sitting here at my computer,  listening to Dr G give the news.  She has a voice that is so fast you can barely understand her at times.  But then, she slowed down, and even paused before delivering the news...

FINAL AFB TEST IS NEGATIVE!!!!!

after that all I heard was mumble, I will listen to the rest of the message later.
  Who cares, Sage is OK!
After 8 excruciatingly long weeks of waiting, we have kicked Murphy to the curb...for now.  Sage's cultures came back with no AFB growing.  No more long hospital admissions for this bug!  Less than half of a very hard treatment course must have been enough, only by the grace of God.  Thank You......THANK YOU!

Today, The sun is shining brighter
The bluebirds are playing on my porch
The waves are crashing lightly
as a cool breeze comes through the windows.
My house smells like Love.

And finally, this CF momma can be free and at peace for a while :-)
And, I put a fresh cut rose on my husbands sink,  to remind him why I plant roses <3

xoxo
Mommy

Goin Home, on a wing and a prayer

It's final.  Barring any total disasters removing Sage's picc line out of his heart (no, that's not dangerous, haha), we will be on our way home by 11am tomorrow, 1/13/11.

Is it weird to say I will kinda miss this place?  I will miss Room Service and mastering the art of chopsticks with every meal (because I can)...The little girl down the hall who has been here for 5 months waiting on a bone marrow transplant who will finally be moving to the cancer center because her mom is a match (yea!)....the teenager with CF next door who has been in and out since Thanksgiving like us who plays guitar all night long....The 20+ nurses that always laugh at Sage's endless shenanigans and put up with the screaming laughter that you can hear all the way down the hall....Mr Potato Head desk manager guy calling Sage Dr. Love....1am IV's and 6am blood draws....even the Spiderman that Mom painted on the window well before Christmas at 2am because Sage was too nervous about the next day's procedures to fall asleep. For all the sadness of very sick children, there are just as many stories of hope, faith, and heroism from the tiniest of hearts,  who have the souls of the bravest warriors.  We are among Kings and Queens here in 5 Childrens, and we are honored to have left our mark here. 

Yup, I will miss it all.  It's been our home for a while.
This experience will make it easier to come back.
With CF, we WILL be back.
Let's just hope it's not too soon.

 I have missed my family being all together. I think we will be turning over a new leaf of peace and harmony at our house.  I don't know about everyone else, but i know I appreciate the little things of home a lot more.
I miss my Ellie the most of all <3
These will be our last phots from Round III, 5C16.
We will update when there is new news.  Now, We wait......

xoxo  Mommy

Round III, 1/11/11: As always, good news- bad news

In his favorite hospital place, the Play Atrium

Let's start with the good.  We are coming home soon...again!
Can't we just end there?


....
The bad news is we are coming home soon because Sage's body is rejecting the IV drugs so badly that it would do him permanent harm to continue treatment. Technically speaking, his eosiniphil levels are at a.1, which is again in the range of moderate DRESS Syndrome, which causes multi system failure.
sigh.
I wish it could all be good news, just for once.

So, as with everything Murphy has touched with his damn laws, all the docs are admitting they were wrong, but will never accept defeat.  It's probably the amikacin now responsible for the rash, and the rest of the drugs in the slurry just activated it (that's what Mom thinks)  The Docs still don't know, so we are going with mom on this one.  His levels are higher now, even then when the rash was at it's worst.  Docs are worried about long term damage.  The new-new-new-new plan is to stop the amikacin immediately, monitor his eosiniphil levels for signs of reduction for 24-48 hours, pull the picc line out and send us home before the weekend.  Then we wait.  That's the worst part for Type-A CF Parents.

Bitter sweet to say the least.

He will probably be able to return to School and basketball Feb 1st.
Of course there is always a catch.  A BIG catch.
The docs did an abcessus culture at his last bronchoscopy, which takes 8 weeks to find the final results.  We have a 50/50 shot.
50% that Sage got just enough antibiotics to eradicate the abcessus, or at least send it into remission to not bother us for a few years.
50% that his culture will still come back positive for abcessus. 

If it is positive, we will have lost round III.  They will readmit us to the hospital, this time for an "extended admission" (longer than a month) to slowly start him back on all the meds once again...basically start his treatment all over...but instead of 6+ weeks, it would be much longer in the hospital and he will not be able to come home on IV's, due to the potential for DRESS reactions.

Playing DS in the bathtub?  Really?

It's hard.  I am learning the ART of Medicine. His CF Doc said today that I should seriously think about medical school.  It had crossed my mind.

Sage has a rare genetic disease, with an extremely rare infection, which is even more rare in children.  There is very little study, no standard of care, no sure fire treatment.  The positive is that the head doc that is treating Sage in the abcessus in conjunction with his Cf doc, has written one of the only existing studies of abcessus in children, with and without CF.  So, if there is anyone who can help, it's this guy.
He did say that even without treatment for a few weeks, abcessus is very slow growing, and therefore will not develop resistance if we stopped the antibiotics too soon. This was kind of good news and made me feel better about all this on and off antibiotics mess.

Hey, we are still doing the happy dance over here...all the way down the ped.'s hallway!  Not under the circumstances that we would have hoped for, but at least we are bound for Home Sweet Home...for now....waiting for the next rock that CF wants to throw at our glass house. (I hope this post was not pre-mature)

Of course, as soon as I wrote this, Sage's rash is starting to pop up.... again!   I will have to wait till the morning to see if this changes things....again.
xoxo  Mommy

Skyline View of Chapel Hill NC From the Play Atrium

Update 1/10/11

Short update because not much happened today.
Sage's kidneys are not holding up again...seems like one step forward 2 steps back.
Sage's Liver function is not good, but stabilized on the new Meds (Urisdiol).
His allergy numbers went up, indicating an increased allergic reaction...but we gave him no new medicines to cause this.  Strange.  Head of allergy was in and wants Sage to be completely stable and decreasing in his allergy tests before the Docs start back the Cefoxitin (the Iv that they thought initially was the cause of the Dress rash).  So...we wait...again.  Did not start the cefoxitin today, and since the allergy levels in his blood went up, it will be 2 days at least before we can move forward.  Then, at least several days on the 2 IV's with no reaction (which I doubt will happen), before we can go home.
uggg
On the plus side, Sage has gained 4.6 POUNDS since we were admitted last week.  Dare I say he is looking "chubby"!!!!!!  For a CF Dude, that's a miracle, and a really good thing.  The secret?  Feed him French Fries, Cheeseburgers, late night roast beef and PB&J with chips...all at will.  Oh, and can't forget the new M&M dispenser and the bag of Lindt truffles he is blowing through.  If he ate like this at home, we would not have a home! Ahhh, room service.  :-)
Also, his school finally dropped him as a student and allowed him to enroll in Hospital School (an actual accredited public school here in the hospital) that way his attendance will still be good.  Carolina Beach will save his spot in class and he will re-enroll when we get outta here.

No Blood, No Guts, No Progress.  I will update tomorrow, as always.
Maybe tonight I will create a penguin arm...

Remember, Girl Scout Cookie Sales have Begun!  If you would like to order, please leave your email address as a comment on here or facebook and Ellie will send you an online e-card with the order form online.  You can place your order...check your email and confirm your order...and in mid February will will mail out orders.  We will ship orders of 12 boxes or more, and it can be mixed varieties.  They freeze and stay good for a year, so stock up and support Ellie's and my Girl Scout Troop #678!  Help me help my troop while I am stuck in Club Med...Please, and THANK YOU!!!

xoxo  Bored Girl Scout Leader Mommy

Sage catching up on his schoolwork

Sage, not interested in doing any more schoolwork

Round III: it's about to get tricky.

red cheeks from all the drugs

No pain, No Gain
Although Sage was in no pain..no blood or guts spilled...we also did not progress towards going home.
Sage feels fine, so that's always a plus.  He is the only kid "not sick" in here.  We are blessed.
The plan is to start him Back on the other IV that we thought was the problem and thought caused the rash...Cefoxitin.  Mom has a bad feeling about this. If all goes by the book and no problems, we could be outta here on Friday with home IV's.  By now, we all know what that means....Murphy.

So, in the mean time we enjoyed the visit from Daddy and Ellie.  I VERY MUCH needed a night off, and I missed Ellie SO MUCH.  We needed a mommy and Ellie night.  We busted out of the hospital, got a room at Embassy Suites, went out to a really good Chinese buffet dinner, and had a great girl's hotel night....in a big fluffy bed.  Of course, I am allergic to down and guess what?  All the pillows had feathers everywhere. So Mom had no pillows.  Murphy again...really?

Daddy noticed that Sage was having difficulty breathing when exercising, is coughing more during treatments, ever since his bronchoscopy.  This may be a sign of not good lung happenings, but nothing to eminently fear.
He still LOVES kickball in the hallway!

Sage, Kick-ballin in the elevator Lobby

Sittin on my window ledge...bored, literally climbing the walls.

Give him something that can be jumped off of, and he will!

Tomorrow brings the cefoxitin IV (added to the amakacin he is already on), picc line dressing change (dreaded tegaderm tape removal), another CBC for signs of organ problems getting worse or better.  Snow and ice is forcasted for tomorrow...I have a feeling that things will get tricky on many different levels.  Fingers crossed and wish us luck.

I miss Ellie  :*(  Happy snow day love <3

xoxo  Mommy

Special Guest Writer....Daddy

It was bound to happen, even a Super Mom needs a break...enter in Super Daddy.  No stranger to hospital CF life himself, Daddy should fill in sufficiently for Mom, although granted, Daddy is a little more scruffy looking.  It is also apparent that I have large literary shoes to fill in writing on Mom's blog, but alas I digress.

After a week without Mom and Sage, and with Nana and Pop Pop lending 'Ellie watching' duties while I was at work, Ellie and I made the 3 hour drive to UNC to find Sage like we left him, cute, loud, crazy, and playing video games - just as I was hoping to find to him, and Mom no worse for where, because she is Super Mom after all. 

 After a slight tap on the Mom painted Spider Man window - still left over from Sage's last stay, Sage saw Daddy through the pane and cheered!  After many forced Daddy hugs, which Sage reluctantly gave because I was interrupting his game, we began to settle in. 

I finally convinced Mom to leave, so she could start her short but needed break.  Taking Ellie in tow for some quality Mom and daughter time, they finally headed to the hotel.

What I first noticed after not seeing Sage for a week is his face.  It's slightly chubby.  Which if you know anything about CF is a great thing to see.  Typically when a CF child, or adult for that matter, gets admitted there is a weight loss  Not in this case.   As with his last admit into UNC a couple weeks ago, Sage has gained 4 POUNDS since Monday!!! 

Rare AFB bug, kidney problems, liver failing, who cares, bring on the GRUB!!!  As a typical Louviere, Sage is all about the food.  It's nice to see some family traditions stay alive no matter what adversities are faced.  His face was also not as red as I was expecting it to be.  However, I'm told a couple hours after he receives his steroids that he does go strawberry again.

We are now in the phase of subtracting some drugs, and adding others.  It's not a fun game to see played on your child, but I guess is a necessarry evil to kill this bug and get him home.  However one look around the hospital ward, seeing what other families are going through, and the severity of their situation, it does put things into perspective.

Did I mention we also had a surprise visit from Sage's favorite nurse Scott.  After a 12 hour shift he stopped in to say hi, and see what how he is doing.  That's why we love UNC, the nurses actually care.

So tonight we will have more Sage and Daddy hugs...(whether he wants them or not :-).  We will watch cartoons ( it would be the Saints game, but I can't emotionally watch Seattle keep beating our defense on the deep ball....Geaux Saints!!), and we will count the days until I can hopefully take my son home for good. 

He doesn't know it, but I will watch him sleep, praying for a better tomorrow.

...Daddy

We're NOT goin home!!!!!!!!!!!!

OMG, REALLY?
So here's the plan.  Mom is going to make a 5 foot cut out of a stuck figure and I'm going to name him Murphy.  Murphy will be on our hospital room door and on our facebook profile.  We want everyone to throw as much crap at Murphay as you can and tell him that MOM has declaired martial Law in 5C16 and I am running his ass outta town, TONIGHT!

All Packed and ready to go...transport was outside the door, the car half loaded, ate breakfast and ready to roll.
and then......

Moooommyyyyyy. I think a bug bit me on my arm a lot of times?  

No honey, there are no bugs in the hospital.

Yes, there are....Look!......

Oooohhhhhh NNNooooooo.

That's not bug bites Sage.  Call the nurse.

The rash is back :*(

I told our CF Doc that it was too easy.  It's NEVER that easy for us.

We live by Murphy's Law.  That's why we hope for the best, but realistically plan for the worst.

That's just the way it's always been.

So, the nurse called the rest of the team.  Everyone came in, and almost in unison, they all looked up at me with the saddest frowney faces I have ever seen  :-{

" I am so sorry" our Doc said.

Unpacking? said Mommy

The frowney faces actually got even frowneyier.

&%#@!!!!!!!

Thanks Murphy.

Our New Door Decorations on 5C16. The nurses should have a field day with this one.

  The New-New Plan:  Go to sleep.  Take lots of blood tests in the morning. Start another 3 day burst of steroids.  Stay in the hospital.  Wait out the rash.  Monday or Tuesday re-start the IV medicine that we "thought" was giving him the rash, but apparently was not the culprit.  Get an opinion from allergy and Infectious Diseases guys over the weekend.  AFB Battle Continues.....Round 3....FIGHT!

xoxo Mommy

Short and SWEET!

The gram negative bacteria in Sage's culture came back.....negative (rare, but normal flora)
The abcessus (afb) preliminary result came back.....negative
The long term culture over 3-4 days is not growing anything, 8 week afb grow out obviously still pending.
Sage's kidneys are not great, but ok for now.
Sage's Liver though is not holding up so good  (ALT @ 100, normal is 10-28).  He will need to take long term liver meds, hopefully not for life :-(
Who thought that liver failure would be good enough....

WE ARE GOIN HOME!!!!!

That will be my update, so I can go pack and do the happy dance.
xoxo  Mommy

round II, short update

I am tired, so this will be short. 
Sage's bronchoscopy culture will be growing some, yet unknown, gram negative bacteria.  We will know what it is tomorrow.  This could be bad, or not so bad...so pray and cross your fingers.  His full bronch results won't be known until Friday.  Even 6 weeks later, afb (abcessus) still may grow out of this bronch culture.  That's only one aspect that totally sucks about this abcessus. 

And, as Sage pointed out, it's facing the proper direction and easier to use.  Smart Kid.

Sage's New PICC line, looks much nicer than the old one.

 Today Sage got to play in the playroom.  He got his 24 hour picc dressing change and the site looks great.  The tegaderm tape was again dreaded, but Sage has the removal down to a science with the tape remover, so it could be worse like it was at the beginning. 







Tonight he needs to get 2 "blood shots" (lab blood draws) to see if the Amikacin levels are correct and killing the bacterias, but not killing his kidneys.  We will know results in 2-3 days, so Friday.  Friday will be a big results day.  Toys are in order for this many pokes in one night  :-D

As always, Sage is OK and is having fun playing "Action Heros" with his reflection in the window  :-)

Dinner with blankie and JellyBean

 

 

 

Tomorrow, some lab results, we re-start his oral clarithromyacin (which he now has to be on for LIFE as a result of this infection), and lots of hope and prayers for no BAD bugs...this time around.  Sage could use a bit of good luck.  We tried kickin Murphey out, but he is always bangin on the door, givin me a headache. If you see him, tell him Mom has declared martial law in the land of 5C16.

xoxo Mommy

Round II

Back again for round 2 to beat the abcessus bug.  Sage and I admitted back to UNC yesterday and immediately started back on his amikacin, one of 3 antibiotics to fight the abcessus.  Home sweet home, back in UNC Children's 5C16.  Our Spiderman painting was still here to greet us when we arrived.

Today was really tough for Sage.  In order to go to the OR to place his picc and get a bronchoscopy, he had to be npo (no food or water) after midnight.  Those horrible dufases didn't come to get him for his procedure until 4pm!!  The good mommy I am, I have to file a complaint with the procedural supervisor.  He is 6, and that was torture.  Yet, he still all smiles :-)  Super Sage!  All the nurses adore him because of his go with the flow attitude and always goofin off personality, regardless of his situation.  Count on Sage for Smiles.  Always.

Finally in the Or procedure room, a familiar face and one of the beloved residents did his bronchoscopy.  He did find mucus strands in the lower right and upper left lung lobes, which is a beginning sign of infection.  He got a great culture from an extensive lavage (saline wash out of the lungs) and Sage is now a part of another study about anaerobic bacteria in pediatric CF cases.

waiting is the worst.

After the bronch., the picc teams came in and as always, had a very hard time placing his central line.  Realistically as parents,  we need to consider the possabilities for giving Sage a port, in place of a picc line, for our next hospital admission.  This is a hard pill to swallow for CF parents because its a milestone in the progression of this dreaded disease in such a little dude.  During the trauma of placing the picc, Sage lost a lot of blood.  Dread for a mommy.  Sage thought it was cool.  It's in, and looks great...much better than last time, so hopefully it won't pull out with every dressing change like the last one before Christmas.

ComeOn!! wakin up mad that his food wasn't here yet!!  Mom got him fries :-)

The plan:  Keep on the IV amikacin.  Restart the clarithromyacin (oral antibiotic) Thurs or Friday.  Get an allergy and dermatology consult.  Hold my breath until the results of his bronch come back.  If he is AFB (abcessus) is negative, then we can go home on the current meds for IV's that last 3 more weeks.  If he is still positive for abcessus....well....all bets are off and we will stay in the hospital for quite a long time.  I'm not even mentally going down that road just yet....


Plan for tomorrow:  less blood,
        more food and fun.
Simple enough :-)
Love, Mommy

Who are these children, and why and they calling me "Mommy"?

Being Home is Bitter Sweet. It's a lot crazier than hospital life, thank God.  Sage and I are adjusting back to normal.  But, by the time we finally get in the swing, it's right back to club med we go.  That's bitter.

The holiday update:  Home For Christmas!
Santa came with a mac truck full of toys and goodies.  Turns out we were all good this year :-D   Saw some snow! Great time with family....I miss my friends SO MUCH. ( I would kill for a carafe of Woodbridge and a full plate of laughter at Beef's today.)  This morning Super-Mom removed the stitches in Sage's back from the biopsy.  Sage was not a fan of that home procedure, and neither was I, but it was ultimately successful and saved us a $90 urgent care visit.  Picc site looks good, biopsy site looks good.  I am treating Sage's wounds where his skin basically peeled up with the dreaded tegadern tape and now are large patches of scab.  The drug rash is 75% better.  It looks great at times and almost back to normal, but then when he gets worked up and running around, it flares up and it doesn't look so good again.  This is to be expected according to the docs, and seems that we are still on track to go back to the hospital on Jan 2nd or 3rd to restart the IV antibiotics for the afb (abcessus) infection.  We will be in for a loooong time, maybe for the rest of his treatment, which may run anywhere from 3-6 weeks.

Hope for the best and plan for the worst.  That's been our CF mantra since the beginning, and good life analogy lately, although I never dreamed I would have to plan for such serious complications.  We have reached a whole new level of CF  crazy with this rash, like a milestone, if you will.  Mommy needs a mental break after this.  Some days it feels like I'm getting hit in the head with milestones...creating battle scars.  Dudes dig chicks with scars?  Not so much.  Thank God I have Louv .  (Don't ever tell him I said that).

I think Louv may actually be smiling?  "And his heart grew 3x's that day...."  <3 U  :-P

 We had a great time taking Christmas photos on our beach, despite the cold. It was a beautiful Christmas day.

Then we started a Christmas campfire to warm the bones after our beach pics.  Roasted marshmallows and coffee warms the soul.

Sage is thoroughly enjoying not having to worry about his PICC line, and reminds me everyday when I say no to an activity that "I don't have a picc line Mom, please let me do ____".  And, he's got a valid point... so I let him.  Mom is not always such a pushover, but I am a softy with a big heart that bleeds at the idea of him having to go through this all over again in just a few short days...Until then, we will as always, be enjoying life to the fullest. Today, we enjoyed pajama day until 4pm.  I highly recommend it.  There was lots of snuggling, waffles and cured meats involved  :-)  Too bad cleaning the house can't be as satisfying as bacon.

My new years wish: 
That everyone can equally enjoy the best,
and the worst of times together. 
Take joy in the small things...
let your heart cherish every little toothed smile
and every single  I love you....
Burn these moments into your heart,
Absorb the love into your soul,
and don't let a single breath get away
without cherishing the life it gives. <3

Love Love Love
Mommy

5C16- Rash day 7: Bustin out.....again!

So, without any further adue....We're outta here!
If all goes well overnight, which we do expect, Sage can be released tomorrow afternoon.  There is of course a BIG catch.  We have to be re-admitted after the 1st of the year for another week-2wk stay....maybe longer (but i hope not).  

Sage's rash biopsy stitches

Sage's internal systems are stable, his kidney function is stable (but still high), but most importantly his Eosinophil levels (associated with the severity of the rash progressing into his other systems) is just a bit lower.  That is enough for the experts to call him stable and on an improving path.  After grilling his CF primary and the head of infectious diseases from the EPA, he is safe to wait out the rash at home for a few days.  When the rash is completely gone, we need to come right back and be admitted again to re-start his antibiotic treatment.

Here's the catch.  Because his resistant M abcessus (AFB)  infection is so rare, they are consulting with experts outside of UNC, including the EPA.  It is absolutely necessary to do the 3 antibiotic combo.  It may even be necessary to go back on the medicine that caused this problem in the first place, the chphalosporin Cefoxitin.  That may keep us in here for quite a while with the same issues the next go round.  The duration of the continuing treatment is also up for discussion. No kid has ever had these particular problems with this resistant species of abcessus before.  Of course, it couldn't just be easy.  Sage is pretty much blazing a new path for treatment in this situation. So, we are coming up with the right answers as we go along. The art of medicine.  I am honored to be such a huge part of the decision making process that will help a lot of other kid's treatments in the future.  It puts things into perspective.  Scary and humbling.


Santa is busy wrapping gifts.  Santa's nursing elves came around the floor and gave every single kid a huge SACK OF TOYS!  In Sage's sac was lots of candy and chocolates, movies, stuffed snowman, Christmas fleece blanket, gift cards, colors and books, 3 games,  and a digital camera!!!!

The other piece of good news is that Sage's picc line has worked its way out far enough sop that he can get it taken out for the week we are home  :-)  He will have to get it replaced as soon as we come back.

Covered in Candy, a kids dream come true :oD

But all that's no matter.....we go day by day.  We are very thankful to hopefully be going home for Christmas.  And even when we come back, Sage has the best team playing for him to beat Dress Syndrome AND kick butt on the AFB infection.  In the big Battle, another winning day for Sage.
I will update the blog from home after Christmas :-)


Merry Christmas <3
xoxo  Mommy