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