5C16- rash day 6: Mom's renewal.

Mom is like a geode....with love <3

Yesterday was hard, even by a rock's standard.
This rock was honestly curled up in the bathroom corner sobbing and asking god....why?
 why oh why.
Even rocks can break.
But you know what? The best rocks break open, only to reveal beautiful treasured crystals never seen by another humans eye.
Mom found her crystals, just when I needed them the most.  Prayers answered.

Sage's rash got so bad it was bleeding and it hurt him to just tough him.  His nebulizer mask strap made big purple blood blisters on his face and ears.  Every time he scratched that itchy rash, more purple bruising and blood.  We sat in the cool bath, we turned down thew temp to 65 degrees and we snuggled.  I did every possible thing I could.  He was never in any pain.

Mom took control in the morning during doctors rounds and insisted on going in a more pro-active direction and to please start running steroids, right now.  After a quick confrence with his team, they were back in the room in less than 30 minutes starting the methylPrednisolone, double 46 mg (a huge dose) to push the rash into submission, regarless of the risk of seriously complicating a viral infection.  At that point, I would take my chances.  It was the right thing to do.



CF style breakfast was served.  Sage's "usual"  2 extra huge pancakes, 4 pats of butter, 8 slices of bacon and 5 sausage links.  He eats almost all of it.
First steroid dose @ 11am the flareup redness of the rash went down by 5%....which was enough to prevent the bleeding and bruising.  Thank God.
Second dose @ 5pm tonight and there is no change in the condition of the rash.  I did notice it flares up, then subsides, so that's a positive step as well.
 I don't thing it's getting worse.  We will take any little win right now.

Rash, day 6 when it's submitting.  This is the best it's looked

The plan is to treat Sage's condition like Dress Syndrome.  It fooled 3 of the leading allergists so far, lets see who else it fools.  Not Mom, that's for sure.  None of the tests from yesterday are back yet, so it's a waiting game for those.  He will be on IV steroids every 6 hours around the clock until (hopefully) the rash dies down.  If the docs can decrease the dose and the rash gets much better, they will send him home on oral steroids for a week, then he will have to come back when the rash is totally gone, re-admit him to go back on the antibiotics...cautiously, one by one.  Remember that nasty AFB infection?  Yeah, we still have to treat that when all of this crazy is done.
If the steroids don't effect the rash dramatically, all bets are off and we go to plan C.
(There is no plan C yet)

Today Sage took a nap (side effects of the steroids...Sage lives in opposite land), played in his beloved playroom for 2 hours, Got a new Iron Man action figure from one of the nurses, had a bath, another PICC dressing change and went to sleep....early (7:30).  Something is happening in his body.  Glad he is sleeping it off.  This gives mom a chance to watch TV, do laundry and have some quiet time.  Thank You Nannie, Mal, and Nick for the super awesome Spiderman balloon and the toys.  Sage adores it! Agenda for tomorrow...test results, playroom, painting spiderman, more steroids, praying for improvement.  No owie procedures scheduled.  Whew.

Rash Day 6 conquered.  Super Sage put up a super fight.  Another day in an unfair battle,  Won.
We will see what tomorrow brings.  One hour, one day, one fight at a time.

xoxo  Mommy

5C15, day 2...Rash day 5.

Louv's Birthday came and went.  Fantasy football playoffs were won.  We were transferred out of New Hanover Childrens in Wilmington, back to UNC Chapel Hill.  And still, no answers.  Sage's condition is worstening by the day, but his spirits are still good.

Sage met 3 of the best specialist doctors in the country today.  Like any happy family, all of them disagreed with each other about what this rash is and what caused or is causing it.
Leading dermatology expert said it's D.r.e.s.s. (you can google Dress syndrome) which has A 10% MORTALITY rate.  Not good when the things he has are measured by chances of death.  That's beyond disheartening.
The leading allergist says it's severe IgG reaction, also life threatning.
His CF doctor is just about in tears,(I could tell)  and she is tough.
(ugh oh).
All of the possibilities are very serious and could have lasting organ damage.

I feel dizzy and I have a headache.

So, Sage and his rash are watching TV, and Mom is gonna lay down for a while and avoid all doctors and totally avoid all medical journals. I will go in the tiny room bathroom and have my meltdown after he goes to sleep.
I just can't do this right now.

In my own personal hell watching my son try to win a totally unfair fight....again,  and go through torturous amounts of pain.....
skin biopsies (he now has stitches in his back) :o(
.....I will put on the happy face, post some photos from today, and snuggle with Sage, crying my eyes out in my heart, but telling him it will all be ok.  I hope.

Still smiling!  You have no idea what he has been through today. My Hero.

Our Room....Christmas Cheer?

Mom's origami snowflakes

Mommy n Me

Skin biopsy and stitches.  That was awful. 

No answers,
No improvement,
No more medicines to treat his infection.
So hope is all we've got.
I'll take it.
Got Prayers?

xoxo  Mommy

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 winning...so 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

Sage's Love for Oli and Nush. Take a look :-)

lindsay's lungs: Getting Nosey about CF with Oli and Nush: "I absolutely love this video from Cystic Fibrosis Trust (www.cftrust.org.uk).

Sage discovered this while in Club Med at UNC Chapel Hill. great timing for a great peek into Cf life of a 6 yr old <3
xoxo mommy

Day 8: Busted outta 5C15! And at 1am, there's no place like home.

We Are HOME!  Yea!
It has been a dreadfully long day.  It's 1:00am, so this is all I'm going to post tonight.  We are finally home, safe and sound, with lots of updates.  But, I just spent 5 hrs on the road in traffic and in the dark, then home IV's for the first time and therapy w/ nebulizers (on 4 hours of sleep).... and I am exhausted.  So, I will give an update with pics tomorrow.
...There's no place like home...
xoxo  Mommy