Tuesday, November 30, 2010

5C15, Day 2

Sage has been poked for blood draws and IV's 11 times now.  Tonight at midnight will be # 12.  This....and the horrible bandage tape....for Sage, is the worst part of CF.
It's funny how it takes a 6 yr old, scared of tape removal, to point out how the fight against CF is easy.  He can do his treatments, take all his medicines, stay "not-sick"....but Mommy, I really REALLY hate that tape.  It really REALLY hurts.
My little man.  So strong.

When they had to  pull off the big dressing with tape covering the PICC line in his arm, he did everything to hold back the tears and be strong.   He said to the nurse..."is it ok to be scared of the tape?" and he started to cry.  The nurse replied in a gentle and caring way, its ok to be scared, I know for you it's a lot to go through and I will do my very best, just like you do.

My strong little man.  Times like this my heart just bleeds for him, and at the same time I am so thankful to be HIS mommy.
He really really wanted to show off his PICC line, probably because he was so strong peeling off that big tape and he is very proud, and so am I.  I debated not posting it, but what the heck do I know....
He thinks the blood is the coolest part  :-)

So, we had a special Mommy and Sage Christmas night.  I went to the cafeteria and bought us 4 different kinds of chips, we snuggled up in his hospital bed, and we watched a Christmas classics marathon...Grinch who stole Christmas, Rudolph the Red Nosed Reindeer, and the Rockefeller tree lighting.  With some mommy hugs, all was right with the world again.....

A special thank you to Nana and Nannie, Mal and Nick for their cool Toys, balloons and chocolate treats  :-)  Sage was very very happy to see that someone besides mommy knew he was here at the hospital.  I reassured him that EVERYONE knows he is here and is cheering him on everyday....and showed him all the people who have left comments on facebook and the blog for him.  He said Wow, that's as many people as at Thanksgiving at Nana's....and that is a LOT....so that was kinda funny  :-) 

And so, with another "blood shot" looming in 48 minutes...we will end this day with happy thoughts of peace and blankie love  :-)

                                                 night night super-sage.  i love u more than u will ever know <3
                                                                                xoxo, Mommy

Monday, November 29, 2010

Club Med, 5C15

We are here.  And so we begin.
We arrived at 10:30am, on orders that Sage can't eat or drink after 7am (we left 5 mins later).  The 3hr 10min. drive....then lugging 2-50lb suitcases + his vest compressor and pillow pet from the parking garage to the hospital entrance...only 7 city blocks away.  No problem (ahem).  Sage toted his 35 lb vest the entire way.  Super-Sage!  He actually couldn't wait to get checked into the hospital to rest...maybe we are on to something here....

Well, anyway, check in, get a room, unpack like it was vacation, meet and greet all the "not quite doctors", Nurses did their thing....then we waited, and waited....and waited.  The 1:00pm  PICC team finally arrived at 3:30, which was for Sage half past STARVING.  After 4 different failed IV attempts, I had to insist we call up the pro's from phlebotomy, and she had immediate success.  The PICC team took about 40 minutes to place the line with some complications, but with a lot more sedation than planned, Sage slept through most of it, with his little dog, Jellybean..  Waking up at 6:30pm, the only thing he wanted to do was play the Wii...and has been playing ever since.

 We chilled as he "recovered", and Sage was starving, so Mom slipped him a big piece of chocolate cake, which Sage in turn scarfed down in less than 3 minutes, all the while begging for dinner.  He ate: 1 piece of chocolate cake, 2 waffle fries, a scoop of mac and cheese with extra cheese, 2/3 of a 1/4lb cheeseburger, and entire jerk chicken breast, 1/2 a turkey sandwich on a kaiser, and one reeces peanut butter cup.....and he had noooo tummy ache.  What a good caterpillar he was.  So, as a reward, mom gave him a big balloon boo-boo bear and a new Glow-Dome...which is super cool by the way.

He sits here happy as a clam with the promise that he could play 100 hours of Wii if he wanted to, and I plan on sticking to that promise.  And, 1 hour after he ate all that food, poor kid is still hungry and wants some bacon.   OOohhhhhHHH...don't let me forget to tell all you CF care-givers about "Bacon.... in a BOX!" No fridge needed.  Just open and eat. This is the scariest and greatest science/food ever invented.

As he plays Wii Spiderman, I need to get a late night snack going, then spend some quality Monday night football time before Super Mario jumps mushrooms into the wii hours of the night.  Pun intended.
Happy Day 1 of our vacation in Club Med UNC Chapel Hill!  :-D
Mommy of Sage and Ellie

Friday, November 26, 2010

Club Med or Bust 11-30-2010

Happy Turkey day!  I hope everyone had a great meal and some great memories with their families over the weekend.  We had 55 people for a 5 course sit down dinner at my mom's in Baltimore.  We survived.  So, to press our luck, we did the traditional all nighter for Black Friday.  Spent $800....SAVED 1,650  :-) So we will have a great Christmas this year...wooohoo! GooooOOO SANTA!  AND no-one, for the second year in a row, went to the ER for stitches or broken bones.  This is a family record!   

Sooooo...  in 60 hours, Sage will be admitted to UNC Chapel Hill for an extended CF stay.  We sign in Monday am for a 1:00 PICC line.  Sage has that nasty AFB infection.  He cultured it 3 times in a row, 3 strikes, your out.  So we chose to treat it rather than wait till he got sick from it, and therefore harder to recover.  We will be in Club Med from Monday till at least next Monday the docs are thinking, depending on how Sage reacts to this very nasty antibiotic combo.  We expect he will go from his healthy crazy self to very sick pretty quickly due to the antibiotics.  You guys know, plan for the worst and hope for the best.  The goal is to be out before by birthday on 12/12 <3  This is the first admit that we will be on the "CF Wing" so we are hoping for some hospital freedoms because Sage is not on contact restrictions.  He will come home on IV's for 6 weeks...get a bronchoscopy, and confirm the AFB is gone.  We  have a pretty good shot at eradicating it, so fingers crossed and we would be thankful for any prayers over the next few weeks.

We are hoping he will be ok enough to go to school sometimes and not miss all of his basketball season.  Docs said to let him do as much "normal" stuff as he can.  Good :-)  He will need some normal.  He DESERVES some normal.

I will stay with Sage and bring my laptop and update lots, I hope.  I am on Facebook for those of you that would like to friend me...I can use all the buddies I can get since Sage will be hogging the TV with his video games in the room  :-P  SmileyEarthGirl or Danielle Louviere.  I will keep everyone posted.  Give thanks for Social Networking and hospital room Christmas lights (do you think I will get in trouble for that?)   LOL  Who cares....

Wish us luck and Happy Thanksgiving!