Friday, April 15, 2011

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...
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...
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


Wednesday, January 12, 2011

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

Tuesday, January 11, 2011

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.
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

Monday, January 10, 2011

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.
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

Sunday, January 9, 2011

Round III: it's about to get tricky.

red cheeks from all the drugs
No pain, No Gain
Although Sage was in 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 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

Saturday, January 8, 2011

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.


Friday, January 7, 2011

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

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

Thursday, January 6, 2011

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....


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

Wednesday, January 5, 2011

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 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

Tuesday, January 4, 2011

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