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

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.

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:

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

5C15 and the idea of a ticket home?

We are STILL waiting on Sage's blood concentration of his antibiotics that were taken 2 days ago...waiting...and waiting.  Sage's night nurse is calling the resident, to call the lab, to find out what's going on.  I am reluctantly clearing our shelves into our suitcase and getting ready.  Hoping that positive thoughts will relay into a one way ticket back to Carolina Beach. 

new picc cover, maybe less tape pain?

Sage needed to have the PICC dressing changed tonight. For those of you that are not familiar, its covered with a high bond clear tape cover, about 4"x4".  It's the ever dreaded Tegaderm.  It hurts really bad when it comes off. I t feels like its burning and peeling the top layers of skin off with the tape.  After a long heart to heart nursing consult from mommy, she remembered the "sensitive skin" PICC line cover, I forgot what it's called...not Tegaderm!  We'll try anything to not put Sage through that kind of pain every 3 days at home.  We'll see at his next change on Sunday if this change is any better.  Special treat for Tegaderm pain....unlimited M&M's and hugs  :*(

Welp...the nurse just came back.  The Amicacin antibiotic levels went to an outside lab for testing and they are not back yet. This is unheard of to be delayed 3 days.  Not sure what to think....so I won't think at all.  Just hope.  The Docs will round in the morning, but if the levels aren't back by 2p, then we are here at least 1 extra day.  I am packing up one suitcase anyway.  Again, wishful thinking sometimes makes wishes come true.  On a side note, when we were admitted it was 70 degrees and beautiful...so we packed some tanks and  pants, a few long sleeves and necessities.  Someone told me today that it is not getting out of the 40's today!!!!  It's going to SNOW tomorrow night??!!  I swear, I am not a bad mom for not bringing coats.  Hahaha!

Play Room, Video game central

As for Sage, he counted down the minutes until the playroom opened up at 2pm, and he played Xbox Tony Hawk skateboarding for 2 hours...hmmmm, I think Santa better get to know Tony  :-)

mesmerized by Tony Hawk

Sage has gained 2.5 pounds since being admitted (opposite of the expected side effects of the antibiotics) because the food is really really good here.  I Know!  Awesome, right?!  Tonights menu, Cripsy shrimp tempora sushi, cheeseburgers and waffle fries, fresh turkey and cheese with yogurt and fruit tray. That is just what we chose to eat...there were lots of crazy good possibilities.  Ok, so maybe I am not in such a rush to go home.....no offense honey  :-)  Your cooking is great, but this is brought to us and I clean nothing....for Freeeeeeeeeeeee!  On the flip side, the coffee really sucks.  blech.

 11pm: IV pump is beeping to be changed...switch IV's, Flush and heprin until 12:30am, add pics to this blog, then off to bed.  Up again at 6am sharp for nebulizers, Docs, vital signs then breakfast.  Hopefully tomorrow's nightly blog update will be written beachside. Sage doesn't want to go home.  He wants to stay until Wednesday to play with Scott again.  He really misses him.  Nurses are awesome.

Today I will leave you with some pics that made me smile today  :-D

xoxo  Mommy

Sage's very first Blankie who has been there...

through every single hospital stay  <3  True love.

Sage doing some "homework"

Doing Nebulizers....Slingin' Webs 

5C15, Day 3...all fun, no pain!

WWWeeeeEEeEeeeee!  That's the sound of Sage climbing the walls  :-D  Today was quite possibly the best hospital day ever!

But first, the technicalities:
Sage had some "baseline" blood-work done when we arrived to the hospital, before we started the antibiotics to get his levels.  The results were indicative of Sage having the early signs of Kidney failure.  The levels were not shockingly bad, but any organ failure added to the "lung stuff" just makes life complicated.  Being overprotective and wanting to be sure, I requested another blood draw for tomorrow to confirm the diagnosis.  The plan is to keep the current plan.  Keep a watchful eye on it, and if his levels get worse showing signs of increased kidney failure while on his multiple antibiotics...well....there are some options.  So, I think I'll just wait to deal with that when the time comes. 

One thing at a time. 

On the other hand, so far there are some minimal complications with the actual antibiotics, and Sage is doing WAY better than his Docs ever expected.  Suspiciously good.   That means one of two things.  1. He is Superman and we are getting outta here 1st thing this Friday to head home for his 6+ week IV regimen.  OR 2. The antibiotic blood levels are way too low (causing a lot less aide effects than anticipated).  If that's the case, they will increase the antibiotics,  which will likely increase the physical side effects.  Then, all bets are off and we will need to stay in club med and extra 2-5 days at the very least to straighten out his optimum blood antibiotic levels at the increased dosage.

I am putting my bet on the Super-Sage option, and clicking my heals 3 times....There's no place like home.

Flyin' Screamin' Slingshot-Parachute Monkey  

AAwww yeah!

On the bright side, Sage had the absolute fun-est, most awesome day in the hospital, e-v-e-r!  No pain today~!  No tape! No blood draws, no dressing changes...so it was all fun and games, literally.  Mommy found the most awesom-ist toy ever, and just knew that it would bring massive amounts of joy...It's a flying-slingshot-parachute-stuffed-monkey.  (Louv is gonna KILL me for giving him this)  Monkey has gotten launched at every Nurse and Physical Therapist on the floor.  This monkey...omg...I just can't put it into words  :-)  The slingshot rubber-bands are built into his arms for maximum launching distance.  Did I mention that it "screams" as he is being sling-shot-ed through the air?  Aw Yeah!  That's the best part!   :-P

Nurse Dude Scott  :-)

Sage also made a guy-buddy...nursing student Scott was Sage's "care-giver" today.  Scott loved Spiderman, and at one time he was a small role Broadway actor.  Boy did Sage attach to him.  Scot was a "cool dude".  He took Sage for his hearing test on the other side of the hospital...then they went up to the playroom and played Tony Hawk Skateboarding on the Xbox for TWO WHOLE HOURS...then he came in and hung out playing Flying Monkey Madness for another hour.  Sage found a friend.

He really needed a friend.  

Scott had no idea that when he came to work today he was going to meet Sage and have a little dude friend for life  :-)  Scott came into our room before he left and told Sage that he may not see him for a long while, but he was the coolest kid- EVER and was so lucky to get to play video games with him!  Sage gave him a big hug then sadly said goodbye.  The door closed behind him and Sage immediately turns to me with teary eyes welling up, Sage says....  I miss Scott already.  :*(   So Sage colored him a Spiderman and made it into a card for him to get on his next Pediatric shift...next Wednesday.  Scott was incredible.  

People like Scott make the world a better place.
Plus, he gave mom a 2 hour sanity break, alone, in peace and quiet.....priceless.

After a game of Superhero Squad Memory with the play room volunteer, then Chocolate iced double chunk brownie treats, Sage then skyped (video-cam chat) with Daddy and Ellie...said goodnight... and ended his day with lots of hugs and kisses.  A perfect ending to a perfect day...well, as perfect as it's gonna get for us anyway.  I'll take it as it comes.

Today in Childrens 5C15,  it was all loud laughter, goofin off, big chocolate smiles, 

and only happy tears with new friends :-)

Tomorrow we find out if we can go home.......
xoxo  Mommy