Friday, December 3, 2010

5C15, Mom's always know best.

Yesterday:
"Yea, absolutely!  You will be going home.  Far off Amicacin levels almost never happen (that should have been my dead give-away).  The only way you would have to stay is if his levels are really super low, but we are good at getting it pretty darn close.....you will be outta here on Friday, chances are 90%......"

Today:
Doctor: "Well...how should I put this...."
Mom: "Well, you should say that I was right and you were wrong."
Doctor:  "I wasn't wrong, I am never wrong, just off a little" (he was being sarcastic)
Mom:  "No sir, MOMS are never wrong (also sarcastic), and doctors are most of the time a little off.  Mom's don't have that luxury".
Doctor:  "So, now what do YOU want to do Mom?"
Mom:  "Stand here until you say I was right" (smart-butt comment with an evil grin)
Doctor: "You were right.  But seriously Danielle, as crazy as some of your requests and questions are, you are almost always right....and as a Doctor, it keeps me on my toes to try and see things from a new perspective.  You always have valid concerns and reasonable solutions, however against the establishment they may be, what you suggest has always been the right thing to do for Sage.  Thank You."
Mom: "No, Thank You for putting up with me always being right"   :-D

So...here we are, as mom figured we would be, on day 5 of 5C15 admission for AFB.  Sage's Amicacin antibiotic levels did come back, and the concentration in his blood was way lower than it should be.  Liver function and ultrasound was ok (borderline, but ok)  But now we face increased kidney problems.  As the Amicacin dosage increases, so does the potential for permanent kidney damage and hearing loss...not to mention the vomiting, loss of appetite, diarrhea, and constant nausea.  We will have to take Sage for Blood draws every 3 days to monitor his kidney function for the next 8 weeks.   I have a feeling that over the next few days Sage's upbeat happy self will literally get flushed down the toilet.  BUT, I am staying cautiously optimistic because he really is so strong and he has a lot of fight in him.  So, I am leaving that suitcase packed.  Tonight starts the increased dosage.  Wish us luck.

On the bright side of the moon (hehe)  Sage had a good day playing in the playroom...terrorizing all the college kid volunteers with a play laser gun. He literally counts down the hours until that playroom opens (12 hours in advance) and the minutes until the clock strikes 2pm.  This is the only time he is ready waiting with socks and shoes on without being told to, 5 minutes in advance, and sitting by the door.  He stays up there on the 7th floor until they tell him he has to come back down to his room, when they close at 4pm.  This gives Mom some time to eat, sleep, and be human for a little while.

I actually have moms and nurses coming up to me in the elevator and in the halls near the playroom saying stuff like...are you Sage's mom?  He's absolutely adorable!....And he is always 100 miles and hour  (the other parent/ nurse sighs)...your a great mom, he is SO happy!  You must be exhausted.   
I reply...yes, on all accounts  :-)  Nice to meet you.


 Today was also art-cart day and the art lady had PAINTS!  She sat waaayyy longer with Sage than she was supposed to....breaking down the epic comic fight between good and evil with spiderman and his nemeses.  All of which are depicted eloquently with poster paints and glitter webs in the growing 5C15 gallery. 








In the powerful words of Fineus and Ferb:
Where_ did we go wrong?
I know you got that list,
and I know that you check it twice...
but dear Santa_,
could you check again_,
because I thought that we were nnniiiiiccceee!






And it's official...Today I stepped outside for the first time in so many days, and it's CoLd!  I watched a bit of news during dinner n(had to bargian with Sage to turn off the cartoons just for 10 minutes) while eating my orange glazed pork and caesar salad.  The weatherman said 100% chance of snow here in Chapel Hill from 4pm-10pm btomorrow.  I don't care what IV's he is on...we are goin outside!  Is there a way to winterize PICC lines?  They gotta make antifreeze for these things.  After all, this visit is going to cost more than my car  :-P  Maybe we can have a gallery opening to offset the expenses?










Besides the flourishing art career, Sage also spends his time bugging mom and playinmg action figures, which he really wanted to post, becuase it is the most important thing to him besides the playroom. Sage took a video of his super hero battle:
video

Chilling out, doing medicines, and doing homework.

Mom's Corner of 5C15...like a plastic 25 yr old sofa bed with a bad bar in the middle



Maybe tomorrow night we will have snow pics in the nightly update?  Dancin around with an IV pole, in Tshirts, in the snow.   LOL  Crazy no.  Just still tryin to love life and are we are very appreciative of all the good things...Still waiting on the salt water kure.
We really do count our blessings every day... and make every breathe a fantastic memory  <3

xoxo  Mommy

3 comments:

  1. Love the video. You all have such courage through it all! Many, many prayers coming your way. Love, Janice Richard

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  2. Love your Blog. Tell Sage his artwork is great. I hope he sends me one of his pictures for Christmas. Love you both. Aunt Carol

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  3. Hey there..Sage is a cutie....my daughter Emily goes to UNC too! I think we have even spent some days in the same room--she remembers them all by the animal painted outside the door! :) Hope you all are doing well...we have had the same course of treatment for the mycobacteria....not an easy one to accomplish!

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