Monday, February 13, 2012

5C17, The CICC Palace

Midnight of day 7 is the best I can do.  My sincere apologies that this is the first blog update.  All I have had time for is the bathroom, and a quick facebook post.  Why you may ask? Because Sage is "restricted".  Not punished......(well, that's not entirely true, he's been punished 3 times since we were admitted).  Hospital restrictions include " Contact Precautions" which means you have to wear a special gown, mask and gloves to walk in or out of our room for anything....And the worst for Sage is now "Droplet Restriction".  This means you have one of the short list of nasty bugs that prevent you from leaving your room for anything.  No exercise, No Physical Therapy, No Playroom, No walking, No gift shop.  NOTHING, No WAY, No HOW, No, no NO.

Essentially this means we are trapped, and I have to entertain Sage for 15 hours a day on a zero budget, with limited supplies.  This has proved exhausting.
Even as I type this entry, so far Sage needed : To unplug, replug, and unplug again his IV machine....To empty his "pee jar" (yes, measuring pee is NOT on my list of stuff to do this week but here it is anyway)....fix glitter messes, clean a spilled water, clean water inside the marker, untangle IV line to get out of bed, make a shake, clean up spilled shake, Give him crackers, clean cracker crumbs out of bed, and in a minute, I will have to measure pee and plug his IV machine back in, fix covers, and tuck him back into hospital bed.....for the 6th 12:15am.
Are you tired just reading it?  yeah.  I know.
Now you see why this is day 7, and today I unfairly yelled at my husband for 25 minutes about something he had nothing to do with, just to let out the dogs of war on someone else other than Sage.
Consider this your public apology.
Ohhh, and by the way,
Happy Valentine's Day Louv.  I love you.  
Yes.... still :-)

On to Sage.  His Bronchoscopy was Tuesday. Picc line was placed without much trouble or bloody mess like last time, so that was great news. They admitted us to a Palace Room With A View, 5C17...over in the "kick".  The Children's Intensive  Cardiac Care (CICC) unit.  Why,? Because all the CF and Cancer beds on floor 5 Childrens were full.  That's depressing.  But, lucky for us, around the corner, the CICC has HUGE rooms with an outside view that is NOT a rooftop decorated with iron sculptures all dedicated to kids who are now angels.  Happy and Sad at the same time, but it is what it is.  So, our kick room is about 10 sq ft. bigger than the other rooms...which made me suspicious right off the bat. Right then I kinda knew the admitting nurses expect Sage for an extended stay,  rather than the usual 3 days in and back home on IV's.  No such luck.

So, Sage's CF Doc...Dr. G started him on of the only drugs that will treat Sage's resistant Staph.  2 days into treatment up pops a rash that looks mysteriously similar to the "DRESS rash" that he developed with the AFB treatment a year before.  At that point, I knew for sure we were in for a longer haul than anticipated.  Kick into Plan C, where Louv has to play the role of Head Girl; Scout Leader and handle all of cookie sales, GS Cookie Booths, all my troop parents, paperwork, money, inventory....of, and the girls in their meetings too.  Good Luck With That!!!

The Vanc. and rash got worse over 4 days, Sage got a BAD stomach bug, 103 fever, vomiting and all kinds of nasty.  It's nothing short of a miracle that I didn't catch it in such confined spaces.  The Rash spread from his picc arm around the line site, to his upper body, left torso, and then to his left arm.  His fever finally broke after almost 3 days of no eating and his body constantly expelling fluids from every orifice.  eewww.  Then yesterday (Sunday) the head allergy and immunology Doc came in and said.  We gotta stop this med,  before he goes into organ failure again.  I said, "Good Idea.  Can we do that now?"  He said Yes, turned around and pulled the plug on Sage's IV.  My kinda guy.  No team of discussion, no consultation with other departments, no talking with lab, or nurses.....just pull the plug.

Easier said and done.  Now what?  That now we are to the  morning on day 7.
His bronchoscopy results are still pending with the only information being " gram negative rods detected".
1. If it was a really bad CF standard bug, they would have found it within 3 days. They test for those first.
2. If it is a rare gram negative bug, it takes a long time to figure out what it is. Pseudonomas has 3 brothers that are similiar but different, and are hard to ID because it's like the 562nd thing they test for.
3. Some rare bugs don't have medicines to get rid of them.
4. Reality: Sage has always not followed the norm.  It is genetic. 

We will know Wednesday morning what is growing, and pray to god it has a cure.
 I don't want this admission to be a game changer.  Please, not yet.  Please.....Not at 7 years old. Not now.  Karma, you owe me one....or a million.  I'd like to cash in all my chips right now if you can do me this solid.

Sage just pulled out his 5th lost baby tooth, quick break to find the tooth-fairy a container, some surgical tape to seal it....clean up the blood....clean up Sage, stop the bleeding, unravel his IV line again....empty the pee bucket, record pee, plug in IV pump, smell hands to check that he used soap, record poo, give medications, tuck him into bed for the 6th time, at 12:40am.  Yeah, he's gonna hate me when O wake him up for Doctors rounds at 7:30 am. I will be the evil mother and he will yell backtalk phrases to me in front of 8 doctors 4 interns and 2 shift nurses.  I will punish him, he will go back to sleep, I will eat cold breakfast that was supposed to be hot and consumed before all the morning drama.  Mom will suck it up, stick to a restriction even in a one room space and on Valentime's Day,  because even though he has CF and in the hospital, we still have some basic truths to follow.  The most important of which is 'don't yell  or throw stuffed animals at the head of the hand that empties your pee bottle'....Say Please and Thank You to everyone unless you are in pain or vomiting....and anything that falls on the floor needs hand sanitizer.  These are Non- Negotiables.

After 12 hours of consultation Dr. G took a stand. You go, Dr. G. She put Sage on an Oral antibiotic that covers lots of Gram negative bacterias (broad spectrum), and we hang tight and wait to see what the devil is growing Wed am,  and plan to start whatever plan of attack we can towards a rare bug that is yet to be identified.  sigh.
Now, we wait.
Now at 12:50am Sage wants a bowl of macaroni and cheese.  He is using the " you will be sorry for not making me this macaroni when I DIE because you didn't feed me macaroni and cheese right NOW".
OH REALLY?....Mom, are you listening to me?  ...No Sage, I am trying not to listen to that because it was all  nasty backtalk..... I love you buddy, go to sleep.....FINE, (under his breath....I'll just starve to death).  You won't starve in 4 hours.  I promise.  Goodnight.....(silence)

Yup, tomorrow should be very interesting. Plan is to wake the beast, stick with oral meds for 24 hours.  Let the rash go down, try to get Sage off some of these restrictions so he is a happier kid ....

Oh geez.  He literally just pages his night nurse to make him macaroni and cheese, because he refused to say please to Mom.....She comes in, and he throws 5 stuffed animals at my head and I am the worst mommy in the world.
Yup, he did.
Yup, I know.

I am the worst because when you are on IV's your mouth doesn't make the "P" or "S" sound.
Your mouth must not be able to make the p or s sound because if it could,  it would Say Sorry...and Please.
You just embarrassed yourself in front of your nurse with your behavior, AND the nurse isn't going to help you, so now what?

Good question.  1:09 am and as soon as he says Sorry and Please, Ill be making Macaroni and Cheese, cleaning up said snack, and tucking him back into bed,  for the 7th time.
Why?  Because I am the worst mom on the face of the planet.  That's why  :-)

Happy Valentine's Day <3
( he just called the nurse and had to apologize for throwing a fit in front of her.  Then he had to apologize to me...and now I need to find a plate and a fork.)

xoxo, Mommy
2:05 am and tucking my Sage into bed for the 8th time, with a full tummy.