Our Hero

This post has taken me a while to put together.  I know what I want to write, but its hard to do it without being overcome by emotion.  You see, we heard back from Shelby's donor's family.  Dave, age 43, father of a gorgeous little girl, Grace, and cute little boy, Jack, and husband of 16 years to his college sweetheart, Christy, was Shelby's donor.  Christy made the brave, selfless decision to donate Dave's organs after he had a brain aneurysm.  The doctors told her there was no way he would recover.  There is no way that we can thank her enough for her decision except to take care of Dave's/Shelby's liver the best we can.  I am honored to have a connection with them.  I really like Christy.  We hope to meet soon.  More to come later....

By the way, maybe you noticed I removed the post-transplant counter.  I kept it up until she was as far post-transplant as she waited.  The 223 day mark has been surpassed.  She is now off steroids and on only 4 transplant-related meds!!!  She's on a few more for IBS, but still FAR less than she's been on since she was 4 weeks old :-)

Friday night she had a fever and has been stuffy and achy.  She's home from school today and she had labs drawn this morning.  Yesterday I noticed petichea on her chest :-(  They can be *normal* with a virus, but let's pray her labs look good.  They will probably be a bit off because of being sick, but I'm hoping for just a "bit," not "a lot."

Yes!

So, so gorgeous.

Today Shelby had liver clinic. We (Scott, Shelby and myself - Mom and Dad held down the fort with Riley, Avery and Benny) headed in last night and stayed at The Ronald McDonald house because her labs had to be drawn at 7 a.m.  Despite the rain and construction and my whining about both (sorry honey!) it was much better to head in last night then head in at 4:30 this morning. 

Boring ultrasound.  Holding still is *not* in Shelby's vocabulary.

Labs were drawn, we got into ultrasound early, checked in to clinic early, grabbed some breakfast and then walked back in the waiting room just as they were calling Shelby's name.  Clinic was running behind (no big shocker), but we kept busy with our electronics and with a visit from Dan, one of the Snow City Arts artists. 

Shelby, Scott and Dan the werewolf, the witch and frankenstein

Shelby's labs look fantastic.  Her liver is VERY happy.  Her wbc and platelets are still low, but they're keeping a close eye on it.  Her ultrasound looked great!  Her spleen keeps reducing in size from transplant.  Since the blood flow to her liver is good (thus no portal hypertension for my liver people) then they mentioned it could be the CellCept (seconardary immunosuppressant she needs to stay on until she's been off the prednisone for 6 months) causing those blood counts to be low.  Today she got the green light to stop taking aspirin and they weaned her prednisone further.  Instead of taking 5 mg daily she'll take 5 mg every other day :-)  Yay!  The plan is labs in 2 weeks (she also just started Sunday evening taking Hecoria - generic Prograf - so we hope that her liver stays happy with that change).  If those are good, labs in another 2 weeks.  If those are good, too, they she can stop the prednisone and we won't go back to liver clinic for......drum roll please....2 months!!!!!  Fantastic :-)  Thank you donor!  Thank you!

Shelby and Megan :-)

We then headed to the PICU to visit one of our favorite nurses, Megan, and to meet another "liver" mom, Jen, who's little guy, Nate, just had a living donor transplant on Monday.  It was great meeting her and he is doing really well.  

Jen and Me - "liver" moms

Tomorrow is Shelby's 6 month transplant anniversary.  To celebrate with her classmates, we stopped by Garrett's popcorn and got plenty to share with her class.  We're pretty darn happy around here.

Here's some funny pics from our lunch at Ed Debevic's.  Enjoy!

Poor Scott!  Look at what the waitress wrote on his hat!

Me and my middle girl

Scott paid with his Packer's debit card and the waitress brought it back on a plate with a piece of cheese - too funny!

One of those days

Today is one of them.  What is "them," you ask?  *Those* days.  Those days where you think about the miracle of Shelby's transplant, but then you are reminded not everyone gets to experience that miracle.  Not that I am not grateful for Shelby's second chance at life, but where I ask "Why do some people get that chance and others don't?"  Why didn't that baby in the PICU room next to Shelby get to live?  Why didn't Haley get a transplant in time?  Today is the 7 year anniversary of the death of Haley.  A very vibrant, wonderful young life that did NOT get a transplant "in time."  She was 11.  One year older than Shelby is right now.  I have been having several of *those days* since the girls started school.  So much change - all for the better mind you - but change none-the-less.  My body, mind and emotions are replaying last year.  Panic attacks are common, especially at night.  The feeling of she-really-can't-be-doing-this-good and waiting for the other shoe to drop.  Sometimes I am so wrapped in my deep feelings of gratitude for Shelby's transplant and her donor and then I whip around to thinking, but why did she get to live?  Why don't others get to live?  Why didn't Haley get THE CALL?  Right now, I just cannot help but think of all the sadness that was around me in the hospital, that I've seen the past decade with my liver friends...its just there.  Sitting in me.  I worried SO much while Shelby waited that she wasn't going to get THE CALL.  It happens.  It happens a lot.  I just pulled this info off of unos.org. 

Waiting list candidates as of today 9:56pm	115,822
Active waiting list candidates as of today 9:56pm	73,847
Transplants January - June 2012	13,963
Donors January - June 2012	6,930

There are 41,975 people who need a transplant, but are not eligible (active) at the moment due to being too sick (probably from having to wait too long) or some other formality (paperwork).  Only 13,963 transplants have taken place this year.  Out of over 100,000 who still need ones.  This is just.  not.  right.  So, today is one of *those* days.  Probably not the update you anxiously await for on here, but the reality.  I'm keepin' it real, people.  Real for my fellow liver/transplant parents out there who might have/might be possibly feeling this way.  Hey, you're not alone!  While I am overjoyed and thankful for all the "normal," there is also the reality that the last year was really shitty.  It was.  It took a toll on us.  Grieving that which we endured will take me a while.  I can't not acknowledge it.  Shelby was sick, very sick...deathly sick.  Its real.  There, deep in me some days, and then surfaces on *those* days.     

August Update

So...let's see, PICC line went fine.  Infusions went fine.  I got to be a pro at running the pump and setting up her med.  I'm sure I'm ready for an RN position...ha, ha, ha...all you in the medical field, I know there is MUCH more I don't know so please know I'm kidding :-D.  Shelby's prograf level came back high last week so we needed to reduce her by .5 mg/day.  We should find out tomorrow what the level from Saturday's labs were.  Just for other transplant families out there, just know we are human - we both gave Shelby her prograf yesterday morning :-O!  Yes, we freaked; long story on how it happened, but it did.  I called the on-call liver doctor and we just needed to skip her evening's dose.  They might call today and say to get an extra level done (Shelby will love that).  Ugh.  Its not *just* taking a pill.  Its a super-duper-important-if-you-want-to-keep-your-liver-happy pill.  That's behind us now.  I'm sure we'll never make a mistake like that again (she says sarcastically).  Saturday morning the line was removed by the home health nurse without a hitch.  Shelby did so good that she got 5 iTunes songs from us suckers.  

She was able to swim with her PICC line due to this ever-so-handy waterproof PICC line cover from DryPro.

Last Wednesday ALL my girls started school - yes, my little Avery is a Kindergartener now.  I'm having a hard time with it.  For 12 years I've had a kid around during the day...now I don't.  Its just a *new* phase of parenting I'll have to adjust to.  Things are so "normal" and "calm" (knock on wood!) that it is a foreign feeling to me.  My body says "Go, go, go!  Get fired up!  Put up your defenses to survive!" and my brain says "You dummy."  I'll adjust.  I will.  Anyway, Avery LOVES school, Shelby is thrilled to be back to school and Riley decided middle school was nothing to worry about.  Now Benny needs to learn to get used to the quiet, too...any advice on that?!?!? 

Shelby snoozing on the couch during an early morning infusion before school last week.

This super-cool Mom let her get blue streaks in her hair...c'mon, she DID have a liver transplant!  Seriously, its just hair and they are SO awesome I want some.

Found this very cute pic on my phone so I had to share!

Riley's beautiful highlights

Avery on the playground/blacktop at "Meet the Teacher Night."  Her room is the light green circle.

One thing to keep me (oh, and Scott helped, too) busy while the girls are at school (as if I had nothing to do!) was finally paint Riley's room from her pee-yellowish color to purple and white.  I'll have to take more pics of the final decorating project when its done.  Its a room I want :-)  Good taste, kid!

Scott (of course ;-) passed his NCLEX (State nursing boards) and is an official RN.  Now he just needs to find a nursing job.  He's applied for many and would like to stay in the health system he's been working for the past 2+ years, but nothing is coming up.  He would like to work in the hospital, but we'll see.  Being a CNA is getting old for him as 90% of the time he ends up being a "sitter."  That means he literally sits and watches over a patient who is violent, a fall risk, confused, going through drug withdrawals, etc.  He's ready to move on to more "nursing" duties.  I don't blame him.

There was a very successful "BBQ To Go" fundraiser last Friday night at our church.  Much thanks to chief cook, Becky Keith, and all those who helped out.  If you haven't seen or checked it out already, Shelby-Palooza, is coming up September 16th.  You don't want to miss that one!!!

So, that's it for The Martin 5 right now.  Getting into school routine, finishing up projects I left for when the girls were in school.  If all goes well, Shelby doesn't have to go to liver clinic until September 13th :-)

Sorry...we're home

Sorry I didn't update sooner, but my back was killing me so bad and my stomach hadn't been feeling well for about 5 days so I spent Monday resting, going to the chiropractor and to my doctor.  I am much better now.  

Home health came late last night after we got home from Riley's middle school orientation.  For this being Shelby's 5th PICC line, this is the first time we have an IV pole and pump that we have to program in the house.  No big deal, just different than we've done the other times. 

She's been playing up a storm with her sisters and her puppy.  Late this afternoon and this evening they played and played and played in the backyard on the play set and playing tag.  This is all GOOD for  not only all kids to be playing outside, but especially for Shelby as she re-started physical therapy this afternoon to help build up some more trunk/hip/leg strength.  

We are back to busy, busy, busy and hoping/praying/crossing toes and fingers that Shelby can start school next Wednesday.  She'll just be crushed if she can't.  

Wow...I just looked at the time...1:22 a.m.  I guess I'd better head off to bed.  Night!

Bored

We got tickets for a riverboat ride through the Ronald McDonald House.  It started to rain at the end, but it was really neat to see the buildings from the view of the river.  Please disregard grumpy 5-year-old I was trying to cut out of the picture.  She didn't want to smile, but she wouldn't move. 

Notice Shelby lovin' up life!

The ferris wheel at Navy Pier.

Getting ready to go on the ferris wheel.  Avery was just not into pictures that day!   Trust me, she was very excited to go on the ferris wheel.

And then she smiled on the merry-go-round!  Blurry, but cute.

Avery posing for me while looking out the window of our room at the Ronald McDonald House.

Shelby held Benny most of the day Friday knowing she wouldn't see him until Monday.  She SO misses her puppy!

Waiting nervously with Grammie for her PICC procedure to begin.

Sleeping off the sedation.

PICC #5 (I think)

Awake from the sedation and hungry.  She doesn't remember this, though. 

In her regular room and she remembered that Papa gave her a Kit Kat for after.  Thanks Papa!

Avery LOVIN' having lunch at the picnic table under our new playset.

SO excited to find this great deal on Craigslist!!!  The guy who sold it to us disassembled it and used his company truck to move it.  Our friend, Kevin, had 3 of his ball players come and help, too.  Within an hour, it was all set up :-D  Swinging will be GREAT therapy for Shelby and Avery now has her "tree house."  Very, VERY blessed to encounter such kind people!

Sisters working on a puzzle together when they visited yesterday.

Discharge should be after tomorrow morning's infusion.  We are bored. My back has had it sleeping in hospitals.  Shelby is hanging in there.  Hope you enjoyed the pictures!

PICC in

This afternoon my Mom, Shelby and I came to Rockford Memorial Hospital.  They admitted Shelby to the PICU and her PICC line was placed.  They sedated her with Versed and Ketamine.  We found out Ketamine is NOT Shelby's friend.  We couldn't stay for the procedure, but Shelby was already yelling from confusion, being scared, etc. before we left the room.  I prayed that the Versed would do its job and she wouldn't remember.  The doctor came to get me when it was done and said that Shelby had night terrors/hallucinations and they had to give her Precedex.  That was our favorite med when she was on the ventilator.  When I got to the room she was quite agitated and was having the side effect of seeing double (triple) from the Ketamine.  I finally got her calmed down and she slept for a while.  She then woke, was hungry, ate ice chips, a popsicle and a big meal.  She asked the nurse if she could go to her room on the floor.  So, here we are.  I think if she has to have a PICC here again, we will talk about other meds to use other than the Ketamine.  I've now read it can cause hallucinations, etc.  Shelby does not remember the PICC being placed, but she does remember her "scary" dream.  Poor kid.  Here's for no more scary dreams and a good night's sleep.

CMV positive

We came into Chicago yesterday for 2 days of appointments.  I thought I'd be *smart* and get her liver labs out of the way yesterday.  We had them done before her first appointment and were surprised when the nurses called around lunchtime to say her liver enzymes were VERY elevated along with her white blood cell count still being low.  :-(  The plan was for her to get her labs drawn again this morning.  If they were worse then she was scheduled for a liver biopsy for tomorrow to check for rejection.  "Luckily" they were about the same, but she tested positive for CMV.   It explains her bad blood counts and elevated liver enzymes.  Amazingly she is feeling perfectly fine.  Really, she's dancing around right now.  :-)  Our team here in Chicago is OK with this being managed locally by our fabulous GI.  The treatment for this is 2 weeks of IV gancyclovir.  She'll have a PICC line placed tomorrow at Rockford Memorial and have to stay inpatient for a few days.  Then she can continue her IV treatment at home.  It will last for 2 weeks with frequent labs and monitoring her levels.  While cmv can be very "pesky" to get under control in immunocompromised people, we are very lucky that it has been caught early.  This is considered a Primary (first) CMV infection.  Phew!  I can't believe I'm saying that, but we are relieved.

Ugh.

This will be quick as its late, I'm exhausted and I have to work in the morning.  Shelby's last 2 blood draws have looked good liver-wise, but not good blood count-wise.  Her white blood cell count and differential (break down of the blood cells) is low.  Low enough to be very concerning of how she's feeling and to take extra, extra good precautions at keeping her healthy.  It *could* be one of her meds causing these numbers to be off or there could be a possible blockage in the blood flow to her liver.  She goes to clinic for the first time in a MONTH :-) this week and they'll do an ultrasound to look at the blood flow to her liver.  Prayers please that she stays healthy - is NOT exposed to any illness - does not spike a temp because then we would have to take her to Chicago - and that the blood flow to her liver is good.  I am hoping that it is just from one of her meds.  We shall see....

Riverhawk's Game

10-year-old liver transplant recipient throws out first pitch - WREX.com – Rockford’s News Leader

 Transplant Survivor Throws Out 1st Pitch at Riverhawks Game

We had a GREAT night!   I'll upload our pictures later.

:D :-) :D

Clinic DID make me that happy!  It went great!  This week she got to stop 2 meds - Nystatin and Valcyte.  They dropped her prednisone dose down to 10 mg from 15 mg and her Prograf level was within range - that is, the *new* lower range 8-10.  No more range of 10-12.  That means a tad bit less immunosuppressed.  Yay!  She is going to start up physical therapy again because she is very stiff when she walks and now has pain in her feet.  Those upper leg/lower abdomen muscles need some work.  She is also starting up her allergy medicine again due to a dry cough that is suspected to be post-nasal drip.  That is no shocker, though.  She was on it for so many years before transplant and me, Riley and Avery all take allergy medicine, too.  Labs in 2 weeks (locally) to make sure her liver is tolerating the lower prednisone dose and.....no clinic for ONE month!!!!  "Normal" is feeling pretty darn good!  THANK YOU ORGAN DONOR!!!!!!

Clinic tomorrow

Tomorrow will mark 12 weeks post-transplant!!!!  We are THRILLED with how well Shelby is doing!  The lloonnggg wait seems like a bad dream now.  So glad we made it through that and she was lucky enough to receive the ultimate gift of organ donation.  She's silly, sassy, has awesome comedic timing...she's full of life.  FULL.  OF.  LIFE.  The kid who has *only* been off oxygen for 5 weeks now is swimming like the fish she is.  Yes, we're very happy.  Tomorrow she should be able to stop another med.  One was stopped on Monday because we ran out and the team said it was o.k. to stop it then.  That was her Nystatin that was 4 times a day.  She's very happy to be done with that!  Tomorrow they should discontinue her Valcyte and lower her prednisone :-)  They should also lower her Prograf range from 10-12 to 8-10.  Very cool.  

This Tuesday is a fundraiser for Shelby at the Rockford Riverhawks game.  Tickets can be purchased up to Monday and 50% of the proceeds go to Shelby's COTA account.  Also, she'll be throwing out the first pitch.  How cool is that?!?!?  E-mail me @pnutsmom76@yahoo.com with "tickets" in the subject line if you want to buy some.  They are $10/each and its Kids Eat Free Night.  Game starts at 7:05 p.m.

GREAT clinic!

Clinic Thursday went great!  Shelby's liver is VERY happy.  Her numbers were the best they've ever been post-transplant.  She goes back in 2 weeks.  Her prograf level came back even lower, so now she's back up to the dose that made it too high (there's no middle ground; its a 0.5 mg pill that we have to play with, that's it).  So instead of 3 mg in the a.m. and 3 mg in the p.m. she's back to 3 mg in the a.m. and 3.5 mg in the p.m.  Tuesday or Wednesday we'll have that level drawn again to see where its at.

The new Ronald McDonald House is beautiful.  Fabulous, really.  It would have been really nice to recover post-transplant there.  We rested very well last evening. 

The bathroom - very nice and BIG!

Not the "main" kitchen," but the one on our floor.  Each floor has a gorgeous HUGE kitchen like this.  This is only half of it.

Shelby LOVING the new TV's in "day" hospital.  They have internet, built-in games, movies, etc.  Pretty awesome.

Waiting for her IV to be put in.

This morning she had her pentamidine infusion.  All went well...for about an hour.  Then she broke out in hives around her IV :-(  The infusion was stopped immediately and she was given Benadryl.  Luckily the hives did not spread and after being checked by the doctor, we were released to go home.  They did give us a script for an Epi pen which we filled at the hospital's pharmacy.  She is doing fine, but this just adds yet *another* drug to her already long enough drug allergy list :-(  They are going to start her on Atovaquone next Friday.  Let's hope she does not react to this one.  Preventing PCP pneumonia is very important. 

Textbook case of hives.

Clinic tomorrow

We head off early tomorrow for clinic.  Her prograf (main immunosuppressant) level was high so she had that particular lab redrawn locally last Friday after a med dose adjustment.  Well, that came back too low!  We'll see how it is tomorrow.  We don't have any concerns; we think she is doing fabulous!  All the girls had colds last week which they so kindly :-( shared with me.  They are all doing well getting over them - even Shelby :-)  Scott, Shelby and I will be staying in Chicago overnight at the brand-spankin' new Ronald McDonald House because Friday morning she has to have her monthly Pentamidine infusion.  No more Kohl's House.  Very sad, but this place should be hotel-like nice. 

Rockin' a 2-piece!

 

My Grandma was up for a visit :D

Riley looking awesome at Camp Winnebago

Avery...let's see.  She was a "Super Hero Puppy Dog" that day.  Ok, Avery....

Bye, bye big backup O2 tank!

Goodbye noisy concentrator!!!!

Little Benny had his first trip to the groomer's.  He's a whopping 5 lbs. now.

Avery sitting on the edge of our new pool.

"What?!?!  Its not filled yet, Mom and Dad?"  C'mon!"  Shelby can't go to any public swimming pools yet and our girls are fish!  I found this great deal at Big Lots and we now have a pool.  Bring on the heat!