Tuesday, December 28, 2010

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

Thursday, December 23, 2010

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

Wednesday, December 22, 2010

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

Tuesday, December 21, 2010

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

Sunday, December 19, 2010

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

Sunday, December 12, 2010

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

Monday, December 6, 2010

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

Sunday, December 5, 2010

No fun, day seven @5C15

No fun photos today.  Sage still got to play in his beloved Playroom from 2-4, but the rest of the day has been filled with crapola.  He had to have a PICC dressing change.  The dreaded tape wasn't so bad because Mommy got to change it this time.  Bad news with that is that his PICC line is moving around...A LOT.  It';s going to far in, then too far out of his body.  He is so crazy active that nothing will secure it in place. This is a problem.  It means that there is increased risk of infection, lots of bleeding at the insertion site, and lots of Mom yelling at Sage to calm down...stop jumping off that thing...stay still....why Sage, oh Why are you upside down with the IV line around your head?.....

In other news Sage had 2 more blood draws today for another Peek and Trough of his Amikacin levels (I just learned today it is spelled with a K, not a C as I had thought).  The also took labs for his Kidney function (we wont have results until the end of the week).  This will have to be done every 3 days for the next 6 weeks at home. (No, I don't know how I will do that since there is not enough time between his IV dosages to get him to the lab to get the draw done, before his next IV).  I must be Super Woman with time warp abilities. Didn't you know? :-P

I am so ready to come home.
Early to bed for Sage tonight (9pm after meds) then Mom will pack up....counting on getting outta here after his am IV's that end at 1:00p tomorrow.
The Picc team has to come look at his line before we leave.  If it's really messed up that's the only way we would be held here...again.

Ok, so as soon as I said no pics, Sage grabbed the camera and wanted to show his favorite things  :-)  So in a day of Short tempers, tape, and needle sticks, we will leave with some of the things that make Sage feel good....like home.....
xoxo  Mommy

All Sage's Favorite things, and our Penguin craft of the day  :-)

I guess Mommy is a favorite thing too  <3

Saturday, December 4, 2010

Let it snow, let it snow, let it SNOW! Fun day in 5C15

Today was a loooong, but fun day.  It snowed...and hard too!  We are going to keep this update short and sweet.  No new news is good news.  Tomorrow they will be taking another set of peek and tough Amicacin levels...which means two blood draws, one in the middle of the night.  So, Sage will hate that.  Tomorrow is also football Sunday and I have informed sage that he WILL be giving up the TV so Mom can watch a few hours of games.  The only bad news is that the doctors and nurses are inststant that because of the location of his PICC that Sage will not be able to practice or play basketball this season.  
After such a fun day, I just don't have the heart to tell him.  :*(

So far Sage's appetite has decreased significantly, but he is not sick from the increased Amicacin dosage that was started last night.  We also won't know about his kidney function until after Monday.  I am realistically optimistic that we will be released Monday afternoon to be home, on IV's on the sofa, by Monday night.


 Sage felt so good today that he was playing in the playroom...made a haunted house craft (featured below)....played Tony hawk skateboarding....and went outside to play in the snow...TWICE!  The first time he got to run around and around, and around.  We made paper snowflakes for some of the kids that will be here for a while and hung them around our floor.  Finally, my crafting brings happiness and not headaches  :-) Then the second time was snowball mania with mom!  Happy pics and video below :-)  Day 1 of increased Amicacin is an overall success. 
xoxo  Mommy

View to the other side of UMC campus

Very Pretty  <3

Playroom, making a "Christmas haunted house" with the volunteers

Sage's House

The ghost in Sage's house  :-D

Can I PPLLLEEAASSEE make a snowball???  PLEASE!??

Aw Yeah, It's ON!

Let it snow, let it snow...let it SNOW!
1st Place snowball Pitcher... from UNC Chapel Hill 5 C15....Saaaaaage Louviere!

Let it SNOWBALL!  (I know I know, we don't have any coats...or gloves)  Oh well.