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