Sunday, March 31, 2013

Our Easter Miracle

"Three years ago on Easter Sunday I received my new heart.
My family and I will be forever grateful to my donor family.
Thanks to them I was given a second chance at life!"

It is very hard to believe that it has been 3 years since
that miraculous Easter Sunday, April 4, 2010.
Easter is such a special Holiday as we celebrate the
life, sacrifice, and resurrection of our Savior Jesus Christ
and for our family it will always have additional meaning
as we remember the gift of life given anonymously
to our Miracle Mason on Easter Sunday.

Mason is definitely our Heart Throb!!

Tomorrow, April 1 (and I'm not fooling!)Mason has a repeat biopsy
because of the mild rejection found 2 1/2 weeks ago. Please
pray with us that these hefty doses of steroids he's been on since
then have gotten rid of the rejection. We will ALL be happy at
our house to get him back off the steroids!!! He is one grumpy
little boy on them! But, more than anything we hope his heart
will remain happy, healthy, and rejection free for a very long time. 

Happy Easter from our family to yours!

(I will post the biopsy results and pictures 
from our Easter in the next couple of days.)

Friday, March 15, 2013


 I got the results from Mason's Biopsy last night after we had gotten home. The news that he his in REJECTION was completely UNEXPECTED! In fact it truly blindsided me! At least it is only mild rejection, but he has both cellular and antibody mediated rejection. It is not bad enough to be admitted to the hospital and put on IV steroids thank goodness, but he is back on oral steroids. He has been off of those nasty but miraculous things for 18 months! Along with it (prednisone oral steroid) he has to be back on 3 prophylactic (anti viral, anti bacterial, and anti fungal) medications as well. It feels like several steps backwards adding 10 doses of meds back into his already 14 daily doses of meds!

This all came so UNEXPECTEDLY, especially because yesterday's echo showed great function and no changes, as well as his heart pressures from the cath looked great. It could be much worse I know, so I am just grateful we caught it before it affected his heart function. I will say, Mason has been a little whiny and grumpy lately but I just couldn't pin point what was wrong. So maybe it has been the rejection making him feel yucky. The transplant team said that the rejection possibly came from him having so many infections over the last 5 months, because this can cause your bodies immune system to rev up (even on his Prograf and Celcept-immune suppression/anti rejection meds) and make antibodies to fight the infections which can then start to fight the transplanted heart.

We all know Miracle Mason is a fighter, 
so with a little help from steroids, prayers, 
and good luck he will kick this rejection
 and make his heart happy again. 

Now for the EVENTFUL part of yesterday..... Mason and I had left the post-op recovery department after recovering from Mason's cath, because he was doing great We were headed to the Cardiology department for his echo and clinic visit. Down the hallway from post-op we stopped in the bathroom because I needed to go potty. Mason got mad and started screaming and crying while I was going potty. I'm not really sure why he was mad. He was trying to slide out of the stroller. So I put him back in, but he was super upset (probably just cranky because of the anesthesia and he was exhausted, we'd left the house at 5am) and he held his breath like he does sometimes when he's mad and crying at home.  But, this time he held for so long he turned purple and passed out in my arms for a several seconds (maybe even a minute)!  

I ran out of the bathroom holding him yelling for help and ran back to the recovery area. Needless to say, it was very scary. He came to on his own but he was still quite purple. Nurses called 'code blue' before they realized he was conscious again. Doctors and nurses surrounded us within seconds. They had me lay him on bed to assess him, check his vitals, and give him some blow by O2. By that time he had recovered from the episode and his vitals were fine, but it took at least 30 minutes for his normal coloring to return. The doctors think it happened because when he held his breath he still had enough morphine and anesthesia on board to cause him to pass out :( They kept us there to observe him for a few more hours to make sure he didn't do it again before we could go down to cardiology clinic. The little Stinker!!!!! Now they will always make us wait in recovery for several hours after anesthesia before they discharge him even if he seems to be doing great. 

We go back next week for IVIg, the week after for Transplant clinic, April 8th for his back rods expansion surgery, and sometime later in April for his Coronary Artery MRI and a follow up biopsy (I don't have the dates yet.) Hopeful these next few visits to Primary's won't be as unexpectedly eventful!!!

Thank you for you love, concern, positive thoughts, and prayers. Have a great weekend!

Thursday, March 14, 2013


The last time I posted we were in the hospital on Valentine's Day with a possible infection in his port (central line). We never found out if there was actually a bacteria growing or if there had been a contaminant in the blood culture test, but the doctors decided to have Mason stay on the IV antibiotics for 14 days just to be sure. They also ran a test while we were there to see if Mason had 'walking pneumonia' because he'd had a cough for over 2 months. That came back negative, but the IV Rocefin he was on seemed to finally clear up his cough. So he must have a had a bacterial pneumonia that didn't completely clear up with the IV antibiotics in January. Although..... about 3 days after the Iv antibiotic course was finished the cough came back!!! hmm??? Mason just always likes to keep us guessing!

(Valetine's Day in the Hospital)

We came home after only 3 days in the hospital, which I'll take anytime. We were able to finish the IV antibiotics at home through his port. Definetly happy to be home, but only 48 hours after being home Mason got sick with a nasty stomach flu. And it lasted 8 days! Yikes, I thought the poor little guy was going to wither away! Thank goodness for his g-tube though, because I was able to keep giving him gatorade and pedialite through it to keep him somewhat hydrated and out of the hospital. Since then Mason has been feeling pretty good except for his mystery cough. The cough is really only bad at night. He will cough so hard that it causes him to vomit up his bed time g-tube feed (He stilll gets a 6 hour tube feed at night and a 2 hour one at nap time to help him reach his nutritional and caloric needs). Hopefully we will figure this cough out sooner than later.

Not only has this been a long rough winter of sicknesses for Mason, you name it and we had it go through the other members of the familiy too. Besides the stomach flu which went through most of us, we've had croup, strep, and mono at our house too. I'm so ready for a healthy happy Spring! Somewhere in between all the sickie bugs we found time for some celebrations and special days this last month. Here is a family update.....

On February 8th Braiden turned 10 years old!
What a amazing boy Braiden has become. He is
so loving and caring. He is one very hard worker and 
Athlete should be his middle name. This last year he 
has played on a super leaugue basaeball team, a flag
football team, and a jr. jazz basketball team. All of 
which Braiden did very well at. He has also spent
alot of time this winter skiing with friends and cousins.
Happy Birthday Braiden! We love you!

Braiden had a sledding birthday party.

Throw a bunch of energetic boys out
in the snow and they'll have a great time!

Our family enjoyed the party too!

Add in some pizza, hot cocoa, cake,.....

and presents, and the party was complete!

Another Special Day We Remember:
Three years ago.....
on this day February 16, 2010 Mason and I said good bye
to our family to go to Stanford and wait for a new heart.
I call it our "Leap of Faith" because we left for an unknown
amount of time to try and get Mason a second chance at life.
I look back on that day and know how very heart broken I
was to leave my family and so scared of the unknown that
lay ahead. But, now 3 years later, with my heart full of 
gratitude for Mason's donor family, I can say anything is 
possible with hope, faith, prayer, and a mother's love!!!
(To read my posts about that day that we said goodbye and
took our leap of faith click here and here.)

On February 27th Ammon turned 8 years old!
It's so hard to believe that Ammon is already 8.
He is such a tender kind sweet boy. His love and 
energy just lights up our home. Ammon has certainly
come along way from when at age one we found out
he is develpmentally delayed. We have never truly been
able to find out a true daignosis, but we do know
Ammon just progresses at his own speed. He is doing
very well though! He attends a special needs small
group classroom at school, but for at least 1/3 to 1/2
of his day he is able to attend a regular ed 2nd grade class.
 Ammon loves to play soccer, ride his bike, and to ski.
Happy Birthday Ammon! We love you!

For Ammon's birthday we took his party to the 
Lone Peak Fire Station for a tour. 
(Ammon loves fire fighters! 
We went there last year too!)

All the kiddos got to take turns sitting in the big
ladder truck.

Ammon loved every minute of our visit
to the fire station!

But, Mason did not so much! He and Daddy
waited in the lobby. He is such a funny boy. He
will watch fire fighter and police officer shows
all day long (they're his favorite), but when we visit 
there in person he gets scared. Silly boy!

Ammon chose a baseball cake because he
also loves to go watch big brother play baseball.
(0r maybe he just likes to go play with the
other kids there and buy treats at the snack bar!)

On March 2nd Ammon was baptized.
It was a very simple and sweet baptism
with close family. It was a perfect day!

We even had some springtime sunshine on Ammon's special day.
Conragtulations Ammon! We are so proud of you!

Mason was just as excited for the baptism as Ammon.
He loves getting dressed up in his church clothes.

What's coming up?
(I have worked on this post for over a week now so I'm a little late on the first one....)

*Mason's annual heart cath and biopsy: March 14th- TODAY (he's in the cath lab right now as I am finishing this post)

It has been 8 1/2 months since Mason's last biopsy. This is the longest he's ever gone! He's only had 2 in the last 12 months. That is a big improvement over his first year post transplant when he had at least 12 biopsies. His second year he had 4. This one is a routine one that he will have every year in March right before his transplant birthday which is April 4th. Normally at an annual transplant heart cath/ biopsy it is a full cath to look at all of the cornary ateries, but with Mason they can't because his femural artieries have been occluded for 2 years now, which is the only way to go in to look at all the arteries.  So he just gets a partial cath and a biopsy to check for rejection. We will come back in April (I don't have the date yet) for an MRI to look at his coronary ateries.

Please pray all goes well in the cath lab and that we receive healthy results from the bopisy.

*VEPTR expansion- April 8th

Mason will have the rods extended in his back again. We saw Dr Smith, Mason's back doctor, last week. Mason has been complaining that his back hurts, but the doctor said that nothing looks abnormal. The pain may just be growing pains because it's time to extend the rods. I also notice he complains more with really cold weather. The rods may cause arthirtic type pain. Poor little guy! But, I will say these rods sure have helped his scoliosis.

Thank you as always for following Mason's journey and for all of your prayers! I will try to update tomorrow with results from the heart biopsy.

Wednesday, March 13, 2013


In February I wanted to do a post honoring congenital heart disease awareness month, but it didn't happen..... so here it is a couple weeks late.

I received this information in a news letter from the Erika Kate Foundation, which is a a very special foundation that offers support to families who have found themselves in the journey of congenital heart disease. I really like the information that they have summarized 
here to educate people about CHD's:

"5 Things You May Not Know About Congenital Heart Defects (CHD)

Read through these surprising statistics in honor of Congenital Heart Defects Awareness Week

1. Defects Are Often Symptom-Free:  CHD symptoms can be difficult to detect. Most serious cases, especially with newborns, may involve lethargy, poor circulation, rapid breathing, and a bluish tint to skin, lips and fingernails.  A heart murmur may also be the first sign of a heart defect.  Click here for a more comprehensive list of symptoms in children of all ages.

2. There are several types of CHD: The areas of the heart impacted can vary substantially, along with the procedures to repair the heart.  Click here to see diagrams of the most common forms of congenital heart defects.

3. CHD is the most common birth defect:  Approximately 40,000 babies are born with CHD each year.  In the U.S., nearly twice as many children die annually from CHD than they do from all forms of childhood cancers combined.  Estimates suggest about 1,000,000 Americans have a congenital heart defect.  Click here for sources.

4. Diagnosis may require many tests: Just one of these tests is a lot for any child or parent to endure.  They may include an echocardiogram, a cardiac catheterization, x-rays, MRIs, and stress tests.

5. CHD is very expensive: The total annual cost of the surgeries in the US to repair or palliate CHD's alone exceeds $2.2 billion every year. The dollars that families spend in long hospital stays, temporary housing, transportation, days off work, and more related to their 

child’s illness are innumerable. "

I hope and pray that although so many babies and children are diagnosed daily with a CHD that as modern medicine continues to find ways to save their lives, that people can become more aware of CHD's which will save children from going undiagnosed. The "heart world" is not a world I would wish upon anyone, but I do hope I can share awareness and hope through our experiences with those who find themselves in our world!

I also want to honor 2 of our heart hero friends in this post. Both of their families are in need of prayers of comfort and strength.

My heart is very sad to watch yet another one of Mason's sweet little heart buddies earn her angel wings. Beautiful Kylie returned home to Heavenly Father after fighting a long hard fight with a very sick heart. She had been waiting 10 months for a Life saving heart transplant. Sadly her body became too sick to wait any longer. Heaven is definetly sweeter now, but Kylie will be greatly missed! Please pray for her family's comfort in these difficult days ahead. Also please consider becoming an organ donor today in honor of Kylie.....(Click here to become an organ donor)


To read Kylies obituary click here and for her blog click here.

Megan is a very sweet 20 year old (she's turns 20 this month) who has had many health challenges her life. She had cancer as a young girl and then received a heart transplant as a 15 year old. She now is in need of a second heart transplant, but sadly due to some other health issues Utah transplant centers have denied her the chance to be relisted. This news hits so close to home with me, because almost 3 1/2 years ago Mason was also denied here in Utah to be listed for a new heart. As most of you know I didn't give up and was able to find a transplant center that would (We love Lucille Packard Children's Hospital at Stanford!!!) give Mason a new heart. Please pray for Megan and her family at this time as they are searching out other options and transplant centers for her.


To read Megan's blog click here.

To all of our heart hero buddies out there,
We love you and pray for you each and everyday!
Love , Miracle Mason and family

"The tests of life are tailored for our own best interests, and all will face the burdens best suited to their own mortal experience. In the end we will realize that God is merciful as well as just and that all the rules are fair. We can be reassured that our challenges will be the ones we needed, and conquering them will bring blessings we could have received in no other way." ~ Jeffrey R. Holland