Wednesday, May 14, 2014

Eighteen Months!

      I don't know that we would have believed the staff were it not for the fact that we had a reminder on our calendars that Olivia's had her new heart for eighteen months already.  Back in October, after she posted a zero - it gave us a reprieve of one clinic appointment and then a six month break from biopsies.  In between then and now we've lived what feels like a lifetime.  What made it double long was our house being under construction and Olivia getting some "crazy monkey virus" (what I call it for a medical mystery) that started with the stomach flu for everyone back in Disney World during her Make a Wish trip back in February.
   Whatever it was that we all had, she had it worse and it came and it went as it saw fit like a relative that you only see and hear from when they need something.  She would throw up, she would have diarrhea (sorry Liv) and then some days she would be fine.  Our ped tested her for all sorts of things and we couldn't find anything.  We tried adding Prevacid to the rotation thinking maybe her tummy was just so irritated it needed help calming down - only to find out later that Prevacid combined with Hecoria/Tacrolimus is no bueno for the kidneys.  By late April - enough was enough, that eighteen month biopsy was due and Miss Liv was in no shape for it but I asked that the staff still put an order in for the labs just so we could look at her chemistry.  

    Not totally shocking after all her trials and tribulations, the labs came back that Missy was very dehydrated and her kidneys weren't very happy.  All her other electrolytes and counts were really pretty normal though - go figure.  A few day admission to Luries for some IV fluids and a ridiculous amount of tests provided zero answers.  All the tummy troubles slowed down and vomiting completely stopped - but still no real answers.  The only other thought is while that Prevacid/Hecoria combo is not nice to kidneys, her other anti-rejection med Cel-cept can cause diarrhea.  Spontaneously, and regardless how long the patient has been on it without any previous issues.  We lowered doses here and there - cutting Hecoria down to 25% of her previous volume; basically causing Brian and I to think surely by the time she's well enough for a biopsy there is going to be some sort of rejection there now because we're taking this big risk rolling the dice to help the kidney function by weaning down on anti-rejection meds. 

    Yesterday...after another few weeks of very frequent blood draws and tweaking this or that the biopsy finally rolled around. Liv was none too pleased but Daddy getting in the bunny suit to walk her into the cath lab made her feel better.  Her recovery however was the worst we have ever seen.  If she knew swear words and how to fly the middle finger I am sure we would have seen it yesterday.  She yelled and generally disliked anything anyone said for about an hour - her face was swollen the whole day as a result of the first hour coming off the sleepytime meds.  To think - people have worried she doesn't have enough fight in her to deal with her occasional bumps in the road.  (makes me laugh)

   Labs came back - perfect, kidneys are happy happy happy.  The troublesome magnesium that is managed by giving Magnesium Oxide (essentially a laxative) was the highest its been since the transplant. Insert eye roll here - the staff's suggestion for the low numbers originally was to give her about 1,600mg of Mag; after a few days of that and some messy cleanups for us, I talked with the Nurse Practitioner and asked if Magnesium was a water or fat soluble mineral.  She confirmed it's water soluble and when I pointed out that her number will likely get worse if her output is more than her intake - she agreed and we cut Miss Liv back to 800mg giving her a break on Wednesdays and Sundays.  Voila - better number.  The best numbers though were a BNP of 60 and a rejection of ZERO.  Another three months free of clinic and no more biposies until Liv's second annual transplant biopsy in October/November!  We are feeling on top of the world right now despite the fact that the rest of the month holds more house renovations, signing Livster up for school and all sorts of crazy times at both jobs.  



Thursday, March 27, 2014

Back in a Big Way

It's been a minute or maybe more like four months or so...but if most of you have been avid fans - ahem Grandparents - you know today's a big day, huge in fact.  Miss Olivia is four years old today.  Where has the time gone?  It still feels like yesterday that we were rushing to prep for your arrival and laying hardwood flooring in the nursery to make sure everything was perfect if and when we were able to bring you home.

The last year in many ways has been the most challenging in parenting you little missy.  You hit three years old, figured you had the new heart that gave you all the oxygen and energy in the world and took off.  The attitude took off exponentially too.  All the while while you are more stubborn than you have pounds on your little frame - you are very sweet and considerate of others.  One minute you'll be bossing people around then turn around and ask someone if they enjoyed their meal and are feeling all right.  You are very empathetic for others when they don't feel well and try to play nurse or caregiver.

As some of you may have noticed by the pics posted - we did make it to Disney World last month for Olivia's Make-A-Wish trip.  It was a once in a lifetime experience and one that both sets of grandparents were able to take with us for part of the time.  Unbeknownst to us, Livvy was battling the stomach flu for much of the trip but she still managed to make the most of it and particularly loved all the princesses.  She has been known to call herself Cinderella Livvy or as I like Cinder-Livvy.  More on the trip later...

For now some stats about the munch...

You're now over three feet tall and your head is past my waist.  You're about 32-33lbs now that you're over the tummy bug entirely.  95th percentile for height and 40th for weight according to your last clinic appointment in January.  I'm jealous.  This has been one of the longest spans of time in your entire life without any doctor appointments.  Everything looked so good in January that all they've asked is for us to come back next month for a biopsy to continue to monitor cellular reaction and at that time they'll also do your labs to see if we need to tweak your meds at all.

Charlie Brown is currently one of your all time fave think it's hysterical to watch Peppermint Patty call Charlie Brown Chuck.  So now you're Chuck Livvy, I'm Chuck Mommy, you have Chuck Daddy and so on.  You and Daddy watch at least some part of a Disney movie almost every night - but only the parts that you really like and then you need to watch them over and over again.  Tonight we're going to give you the much coveted Frozen DVD and we're fully anticipating that you watch it until you burn out the DVD or break the DVD player.  

Once we brought you home from your Norwood around your one month old birthday - I never really had a doubt that we wouldn't get to celebrate many of your birthdays.  But we know that things happen and there are no guarantees in life aside from the fact that we love you forever and ever to the moon and back double stampies and no erasies.

Happy Birthday Livvy!
Mommy & Daddy

Tuesday, November 19, 2013

Things I am Thankful for - Day 19

Olivia's energy...

Her grandparents left her with me tonight giving a report that she has incredible amounts of never-ending energy.  It's true she has been running circles around the entire first floor like it's a race track and hasn't let up over the last hour.

This girl was so lethargic last fall that going up the stairs became too much for her towards the end before her transplant.

Now...she's literally a blur as she flies by full of giggles and pretending to be Super Livvy!

How can I not be thankful for that change of heart - literally?

Things I am Thankful for - Day 18

Cooking - it's my therapeutic outlet.  I love to bake even though I generally really have no desire to eat the sweet treats.  I love the homey feeling that it gives me and the smell it sends through the air.  I want Olivia to look back on those moments of me baking cookies and remember it with a happiness or thoughts of her stuffing her little face :).

Satisfaction to me is when I cook a meal and she enjoys it, cleaning her plate and asking for more.  But it CAN'T BE TOO SPICY!!!  (I'm still hoping she outgrows this phase and embraces my love of everything hot)

Things I am Thankful for - Day 17

Early detection medicine that allowed Livvy's HLHS to be diagnosed in utero...and more importantly the doctors who took the time to explain that while her road may be tough and have bumps in it, that it was all manageable with the right team.  They were so right, it was and has all been manageable.  Those first few days probably changed my life more than any day that has followed.  

To date - my appreciation of doctors who are just square and up front with the information at hand remain my favorite.  Of course I like that they have a good bedside manner with Livvy, but if they were cold and fact based; I'd be okay with that because we would be informed.  If they don't know why something's happening, I want to know that they don't know and will work with us to figure it out.  If they know we're going to be in the hospital for multiple days while they wait for symptoms to subside - I want to know that and I can find peace in that information.

Knowledge is power.

Things I am Thankful for - Day 16

Shoes and purses - no matter how my weight goes up and down over the years...these accessories always fit me like they were meant to be!

Things I am Thankful for - Day 15

This blog, I know that so many of you follow Olivia and root her on.  Someday when she's older she will have all of these entries to look back on the random thoughts that her Mommy had throughout most of her early years and hospital stays.