Friday, April 4, 2014

Happy 4th Angel Heart Birthday!

Four years ago today, 
on Easter Sunday April 4, 2010 
our sweet Miracle Mason was given a new beginning.
 A second chance at life. 

As the recipient of a very special donor heart he has been able to 
ride a scooter,
go to school,
be silly,
dress up,
play ball,
and much much more,
....... But, most of all he's been able to
just enjoy life!
And, that he does!
And that we get to do also!
Each and every day.....
enjoy life with our Miracle Mason!

Words can not properly express the joy and gratitude we have for Mason's donor family. If I knew who they were I'd personally love to hug them, thank them, and cry with them. I'd love for them to hear their child's heart still beating. I'd love for them to see Mason and how full of life he is! I'd love them to know how amazing we think they are for thinking to donate during a time that was most definitely heartbreaking for them. They have still chosen to remain anonymous, but maybe some day they will decide they want to let us know who they are. We will always hold a very special place in our hearts for Mason's sweet donor and family. We pray at this time of years and always that they may be comforted by our Savior's love as they miss their sweet child. 

We celebrated today in honor of Mason's donor with our annual sending off of balloons into the sky and a yummy little heart cake.....

We are also very grateful for all the nurses and doctors at Lucille Packard Children's Hospital (@Stanford) and at Primary Children's hospital! They have helped us every step of the way on our Miracle Mason heart journey!

We definitely:

April is also "Donate Life" Month 

Over 121,000 people in the United States are waiting for an organ transplant. Unfortunately, many of those people will die waiting because only about 46% of Americans are registered donors. Are you a registered donor yet? If you are not a registered donor, please consider signing up. You can find your state’s registry at . Organ donation saves lives. We all know we still have our Miracle Mason with us because of organ donation!!

Wednesday, April 2, 2014

March Flew By!

Here'a just a quick follow up after Mason's biopsy results and the yucky 'corona virus'. Mason felt crummy for about a week after staying the night at Primary's on March 20. Even though this virus is supposed to be a respiratory virus he definitely had more GI symptoms than anything else. I'm glad it was rather short lived and it didn't turn into pneumonia like it very well could have.

The transplant team in the mean time has come up with a plan for Mason's rejection. His DSA's (donor specific antibody blood work) came back and showed he definitely still has a lot of of the bad antibodies fighting against his beautiful heart. He will never have 0 DSA's because he has had quite a few since the beginning of his transplant, but we need to get the amount down so that his heart is happy and rejection free. (The good news is that his heart function remains great! ). The plan is to keep him on his moderately low dose of steroids, with no large pulse dose this time (hooray), but instead to go up to his max dose of Celcept. He has already been on his max dose of Prograf so that will stay the same. Doing this suppresses his immune system more put not as much as high doses of steroids.  Mason will also continue IVIg treatments now monthly. ( Which was actually approved by the insurance this time to treat his rejection.....great news!) Mason will be seen at transplant clinic 2x a month with a repeat biopsy in June. We go next week to clinic and the team said they may also add one more immune suppressant that he hasn't been before at that time.

March brought us Spring, some sunny days, and lots of wind! And of course, here in Utah we even got some rain and snow! But, on those sunny days it was so nice to get outside and play! Here's what we were up to in March.....

Fun at the park! Hooray for Spring!

Mason just could not wait any longer
to get out his police car and take it for a 
spin or even give his little cousin James
some driving lessons!

Baseball March Madness in sunny St George with the family.....
Braiden, cousin Peter, and their whole team played Great!
They took 3rd place in the tournament out of 47 teams!
Miracle Mason is still their #1 fan! Go Clutch!

Mason was sick our first day in St George so he and I stayed behind, but Mark and the kids went and hiked the Dixie Rock. They had fun and took some awesome pictures!

(From top to bottom: Kaitlin, Preston
cousin Peter, Braiden, and Ammon)

The day after we returned from St. George it was St. Patty's day. And, as always a sneaky little leprechaun came to visit our home while we were still sleeping. Lenny the Leprechaun snuck into our fridge and turned our milk green! That crazy fellow! But, he also left a bunch of green treats for everybody along with his messy glitter all over the kitchen table! (Do we resort to just about anything to tell our kids so they'll be good and get to bed on time??!!! I know I do!)

Ammon and Braiden received several awards at
March's cubscout pack meeting. Braiden earned his
Arrow of light and moved on to 11 year old scouts.
Good job boys!
(Thank goodness for their wonderful scout leaders!)

This was Mason's biopsy day on March 20th.... 
It was very unlike him, but he was sad and 
 whiny when we checked in at Primary's that day.
Poor little guy!
(I couldn't get my pictures to load on to the
blog when I posted with his biopsy results.)

With a little rest and extra TLC,
just one night in the hospital did the trick!

I'll take one night at the hospital any time
with my Miracle Mason!

Cheers to a healthy and happy Spring!!!

Thursday, March 20, 2014

What A Day! Let's Just Dance in the Spring Rain.....

Mason woke up Wednesday (yesterday) feeling just fine after feeling so yucky on Tuesday. But, we went into see the Transplant team at clinic anyways just to make sure they were comfortable sending him in for his procedures scheduled for today. With how well he felt and looked, and blood work being normal the team gave us the go ahead for today's annual cath/ biopsy and coronary MRI.

We checked in at 6:30 am this morning for his procedures.  Usually Mason is happy to be at Primary's and looks forward to coming, but this morning a little while after checking into pre-op he got really cranky and whiney.  I didn't think much of it at the time but later in the day it all started to make sense. Why? I'll let you know in just a bit, because I'd rather start with good news first.

The good.....
Mason's heart and wedge pressures read during the cath were beautiful!! In fact the lowest and best that they've EVER been. Mason's echo showed great heart function. And drum roll please..... his coronary arteries all appear very normal and healthy!! ( Healthy CA's are always a concern for transplant patients, but even more so those with a history of antibody rejection like Mason.) So hip hip hooray for this great news!! For this we are very grateful!!

The not so good.....
Mason had a rough time recovering from the anesthesia. He was needing oxygen and had a high respiratory rate even two hours post.  Usually he recovers quite smoothly ( but of course, not always), so I was a little concerned. But then my concern heightened when he spiked a fever of 103!! And his lungs were sounding junky when they had been totally clear this morning.  The team ordered a viral panel and sure enough he has a yucky respiratory virus called Corona virus.  So most likely something completely different than tummy bug he'd had, and it hit him fast and hard!! This probably explains the crankiness this morning though. Like I said the other day.....I think I jinxed myself!! He hadn't been admitted in a little over six months and here we are spending the night at the Hotel on the Hill. Hopefully just for the night. I think with this new virus manifesting itself while he still had anesthesia in his system he has struggled to fully recover from today's procedures.

Lastly and sadly I announce that his rejection has crept back. It's not quite as bad as we found last March at his annual biopsy, but it's still not the beautiful '0' rejection he had in November. It is mild rejection (mainly antibody mediated, as usual with Mason) ,but still makes this heart mama sad and concerned!! The score is C2 V3 ISHLT O pAMR 2. While we are staying the night he is getting an IVIg treatment to hopefully help with his antibody rejection. The transplant team had us skip his last 2 monthly treatments to see if he'd be okay without it, but today's results show he most likely still needs them!! As for his steroids, he'll probably have to go up to a higher dose again, but the team wants to wait until he gets over this Corona virus.

With the good news and the not so good news news today we still remain forever grateful for Mason's gifted heart. Mason's journey may bring us ups and downs and continued roller coaster rides, but we'll take it because he's here enjoying life with us each day!! Spring is here so don't wait for the storm to pass, let's just continue to dance in the rain!!

Tuesday, March 18, 2014

February Fun & CHD Awareness

Another 6 weeks has flow by since I last posted. I actually started this post at least 3 weeks ago, but it seems like I rarely have uninterrupted time to ever finish anything!!

Quick update:
 Mason has been doing really well all winter. But, I think I jinxed myself by telling that to too many people lately..... Last Wednesday night he got sick with a really nasty tummy bug. In fact we had just gotten to St. George as a family late Wednesday night for a weekend baseball tournament when it hit him! Of course right?! He was pretty miserable for about 36 hours but, besides lingering diarrheas he seemed to have kicked it.....until today when it hit him again and even worse! He hasn't been able to keep anything down except for a few ice chips. At least we are back home (we came home Sunday), but it's not good timing for him to be sick! Mason has his ANNUAL HEART CATH/BIOPSY and CORONARY MRI this Thursday March 20. We've had it scheduled for two months! And we really don't want to postpone it because it's been 4 months since his last biopsy when he finally got a clean biopsy after 8 months of rejection. Also the transplant team decided to skip his February and March IVIg treatments to see if he could stay rejection free without it......which makes me really nervous! The Transplant team wants to see Mason tomorrow morning in clinic to do blood work and check him out to decide if we can go forward with Thursday's procedures.  Hopefully Mason feels better and we get the go ahead!! 

(I will post some pictures of our weekend in St George for baseball March Madness next time.)

February was a busy month with birthdays, Valentine's, baseball, and doctors appointments.......

Braiden's Birthday

Can't believe Braiden turned 11 on February 8!!! 
My kids are growing up TOO fast! 
Happy Belated Birthday Braiden!
You are one very handsome, strong, and tough boy on the outside,
 but I also know you have the most tender loving heart on the inside! 
Thanks for being YOU! 
Love, Mom

Instead of a birthday party Braiden just chose to
have crepes for breakfast and go skiing with
his siblings and a couple cousins.
He had a great day on the slopes at Alta!!

That night we called it good with a couple
presents and a yummy birthday cake!

Braiden took a break from baseball in the fall and tried
 out lacrosse, which he did really well at! But I
 think Baseball and skiing are definitely his favorites!

Over President's weekend Braiden had a baseball 
tournament in St George. Fortunately our nephew 
Peter is on his team so we sometimes take turns
going to the out of town tournaments. So Braiden 
and Kaitlin went with their family for that tournament
while we stayed behind to keep up with everything
else going on at home.

Braiden and his team played great.....

and they took 2nd place!! Good job Braiden!
And thank you to Kaitlin for going along to 
cheer him on!!!

February is always Heart Health Month.
The week of February 7-14 ( usually around Valentine's)
was Congenital Heart Disease Awareness Week....

I know I'm a quite late, but still thought I'd share some facts
to help spread awareness about what makes our 
Mason's journey so special and amazing:

  • Congenital Heart Defects are the #1 birth defect in the world.
  • By the 28th day of pregnancy, the baby’s heart is formed.  A CHD occurs usually before the mother knows she is pregnant.
  • Congenital Heart Defects are the #1 cause of birth defect related deaths.
  • About 1 out of every 100 babies are born each year with a Congenital Heart Defect, approximately 40,000 per year.
  • This year, approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects
  • There are 40 known hearts defects, with more being identified every year.
  • Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHDs.
  • Over 50% of CHDers will have at least one open heart surgery.
  • 40,000 units of blood are used each day, half of that is used by CHDers.
  • The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year.
  • The earlier a CHD is detected and treated, the more likely the affected child will survive and have less long term health complications.
  • In some cases, a Congenital Heart Defect will not be diagnosed until adolescence or adulthood.
  • Of every dollar the government spends on medical funding, only a fraction of a penny goes to Congenital Heart Defect research.

 Mason has endured 3 open heart surgeries, 22 heart cath/biopsies, too many to count hospital stays, currently takes 15 doses of meds a day, receives added nutrition through his g-tube daily, besides his one main chest 'zipper scar' has many scars from chest tubes, picc lines and IJ lines to show how tough he is, and most of all he has by far exceeded medical expectations! He is our Heart Hero! But sadly many babies don't survive and sometimes it's because there isn't enough awareness about the signs to watch for. (Especially when the baby is not diagnosed during the mom's pregnancy like Mason wasn't!) 

For more information about the symptoms of a CHD click here.

Valentine's Day

Ammon and Mason were very excited about 
Valentine's Day this year! They loved
exchanging Valentine's at school and then
sharing them with each other at home!

These two cute boys were my Valentine's dinner date.
(Mark was at a hunting trade show for work)

They chose heart waffles with strawberries 
for dinner. It was a yummy choice!!!

Oh how these two boys love,tease, and fight with
each other! Life would be quite dull without them!

Ammon's Birthday

Happy belated birthday to my sweet, energetic, 
always happy, and loving Ammon!! 
Crazy that you turned 9 on February 27!! 
I'm so proud to call you mine!! 
I Love you Ammon!!
Love, Mom

Ammon knows how to have fun wherever
 he goes! Life is just always a party to him!!

Smallest things bring him happiness and excitement!

Even if it's just dressing up or 
getting donuts with cousins!

Ammon is great at riding his bike and scooter.
He also is one awesome little skier!

Ammon continues to beat to his own drum
and progress at his own rate.....He baffles his teachers
as well as myself, because some things he learns so easy 
and other things he's been working on for several years.
He is in the small group 'life skills class for about 2/3
 of the school day and 1/3 with the regular third grade.
But, the most important thing is that he continues to 
progress and he enjoys life!! 

Ammon has asked for months to go to
the police station for his birthday.....
So that's exactly what we did!

A few of his friends came over for pizza, 
cake, and presents and then we all headed
over to the Police Station for a grand tour!

I think the kids all had a great time!
(Below, they are all standing next to the
K9 police truck.... after they had met the 
police dog and watched him in action!)

Doctor's Appointments

This month Mason had a bunch of doctor's appointments. First he had an appointment up at the University of Utah getting a bone density scan. Because of his chronic use of steroids there has been concern that it could be affecting his bone density. The results showed that he is about at 2% below the low end of normal. Not bad, but we certainly don't want it to get worse. So we are in a waiting list to get into see an Endocrinologist at Primary's who specializes in bone health.

Mason's next appointment was getting his hearing tested. His preschool teacher, speech therapist, and I have had concerns about his hearing. So sure enough our hunches were right and he did not pass his hearing test (the pressure in his ears was also quite high). I thought to myself, "what more does this poor little guy have to deal with?!

The following week we went to see our ENT to get her opinion on what is going on with Mason's hearing. You'll never guess what she pulled out of his right ear.....a sea shell!! It was pressed way down next to his right ear drum. It has been there at least since July when we were at the beach! No wonder he wasn't hearing well! The doctor checked his ear pressures after removing the shell and they were normal. It seems to have helped his hearing a lot. Well at least he doesn't ask me, "what" 100 times a day anymore!

I took a picture of the famous sea shell
in between  this pencil and ring so you
could see the size of the crazy thing that was
hanging out in Mason's ear for several months!

Mason also had a check up at the dentist. Unfortunately he had a large cavity! We went back another day to have it fixed and he did great. He was very brave! I guess with all he's been though, a shot and a filling at the dentist is nothing!

The only bummer about our trip to the dentist
was that on our way home, when his lip was
still numb he bit it pretty bad and gave
himself a big fat swollen lip!!

Poor little guy!

So that was our February in a nutshell. Busy and exciting! Now we're hoping for Mason to kick this newest little bug ASAP and get great results from his heart cath/biopsy and MRI on Thursday. Please think positive thoughts and remember Miracle Mason in your prayers this week. As always thanks for your love and friendship!