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....