THANKFUL

I received great news yesterday afternoon! Wednesday's Cardiac MRI showed Mason's coronary arteries as being healthy and normal. I LOVE good news!!! Needless to say, we are all very relieved and grateful for the many prayers and positive thoughts offered for our Miracle Mason and his happy little heart.

Hopefully now Mason can have a break from anesthesia and same-day surgery for awhile. You know you've been to the same-day surgery too often when you walk in to the pre-op registration and the ladies behind the desk all say, "Hi Mason and Mrs Strickland. How are you two this morning?"!!! They probably check in two hundred or more patients each day, so when they know you by name..... you've been there a little too frequently!

The transplant team also had blood work done while we were there Wednesday to look at Mason's DSA's (Donor specific antibodies). We are hoping with the high dose of IVIg two weeks ago and the steroids he's been on for 6 weeks that his antibody count has gone down.  The results should be back early next week. With the results the transplant team will decide Mason's plan, how much longer on the steroids and when will be his next biopsy to recheck the rejection.

For now, we count our blessings for Mason's healthy coronary arteries!

Cardiac MRI Tomorrow

I'll be honest.....I'm nervous about Mason's cardiac MRI tomorrow. He is having this done to look at his coronary arteries. Normally coronary arteries can be looked at during a full heart cath, but with Mason it's just not possible because both of his femoral arteries (in the groin) are occluded. In pediatrics the cath doctor goes in through the femoral arteries to get a coronary angiogram.  (In adults I believe they can go through an artery in the arm.) This is the best method to look at coronary artery health. Via MRI, like Mason will be having done is another method, it's just not always as accurate.

Mason is having this done as part of his routine "annual" transplant checkup. But, he hasn't had it done in 18 months. For this reason I am nervous! Plus, coronary artery disease (CAD) is the most common cause of failed heart transplants! And what is one of the main causes of  CAD? Antibody mediated rejection. Okay, so I have reason to be nervous right?! Especially with Mason having this recent antibody mediated rejection. But, on the bright side..... Mason seems to be doing great and his echos have all looked good through this recent rejection. So hopefully I'm worrying about nothing!!!

Please pray, think positive thoughts, and hope with us for good healthy results tomorrow.

Thank you!

Rod Expansion Surgery and Birthdays

We checked into the Primary Children's Medical Center at 6am Monday morning for Mason's 2nd back rod expansion surgery. Mason was happy as could be to be back at his home away from home-Primary's....silly boy! But, he did cry when I had to hand him over to the anesthesiologist, which never gets any easier with time. It makes for a tearful mom!

 The procedure to expand his rods took about an hour. Last time it took an hour and a half, but that extra time was spent placing his IV. Yesterday all they had to do was access his port, which is much quicker and easier than trying to find a spot to place an IV on Mason.

He has another 2 1/2 inch incision in his mid back where the doctor entered in to extend the rods. The rods were extended about 2 cm's. Besides Mason's back being a little sore he's doing really well! We stayed overnight just to be cautious and he also got his monthly IVIg treatment through the night while we were there. Double duty during a hospital stay is the way to go!  We were discharged and came home Tuesday afternoon. I'll take a one night stay at the hospital any day!!!

April 4:  Third Angel Heart Birthday

Happy 3rd Angel Heart Birthday Miracle Mason! 

On April 4, 2010 Mason received his new heart which 

saved his life! 

This amazing gift has has given him the chance to spend more 

time with our family here on earth, the chance to run and 

play like little boys should, the chance to teach us all more about

hope and faith, the chance to learn and grow, the chance to

continue melting our hearts with his wise eyes and contagious

smile, and so much more!!!  Thank you with endless love and 

gratitude to his donor family who we think of each and everyday!

We could never say thank you enough.....

We pray for our donor's family especially at this time

 of year that they may feel comfort and love from our

 Father Above. We pray even though they have chosen to 

remain anonymous, that they know we will forever be

grateful!!!

Our tradition is to write thank you messages

on balloons and send them into the sky in honor

of Mason's special donor in Heaven.

Then our annual Mason-sized little heart cake 

topped off our Angel Heart Birthday celebration!

And, this year Mason even ate some of it!

(He's had quite the appetite on this recent round

of steroids! Hooray for the bonus side affect!!)

April 5: Preston's 12th Birthday

My sweet little Preston born on April 5, 2001

is not so little anymore! I can't believe he's 12!!!

Preston is one very sensitive and kind son, brother,

cousin, and friend. He is liked by everyone he meets!

He is a very good example to all of his younger brothers.

Preston is fun to be with, smart, and athletic. He enjoys

skateboarding, mountain biking, surfing (when we

 visit the beach in Cali), playing lacrosse, and skiing. In

fact this year he has become quite the stunster on skis!

Preston, we love you and and are very proud of you!

Happy Birthday!

Here are a few pictures of Preston having 

some crazy fun on skis this year!

The day before Preston's birthday he

enjoyed a ski day with cousins and friends.

Mason and I went up to the Alta ski lodge at

lunchtime to deliver a cake and help them celebrate.

Then on Preston's birthday Mark and I took he, Kaitlin,

and Braiden out for a special birthday dinner.

We returned home for every one's favorite part

of any birthday celebration, birthday cake and presents.

Happy 12th Birthday Preston!

Happy 3rd Angel Heart Birthday Mason!

Happy Spring to you all!

PS. Are you an organ donor yet? (go to www.donatelife.net)

Monday's Biopsy Results and Easter Pictures

To those of you who have checked the blog for Monday's biopsy results I apologize for not posting sooner. My kiddos are on spring break this week so I haven't had much free time! The results were not what we were hoping for, but at least the rejection did not get any worse. Mason's rejection remained the same even after all those hefty doses of steroids. (For those who understand the biopsy scoring that Primary's uses, his score in March and this recent one on Monday was: C3 V3 ISHLT 1R pAMR 2.) Basically he's still having mild cellular and vascular (antibody mediated) rejection.

 The good new is.....his echo still looks good, so his heart function has not been affected by the rejection.  Plan of action? Mason will need to stay on the steroids for awhile longer, probably at least a month or so (BUMMER). He won't have to go back up on the high doses he started on last month but will stay on a moderate maintenance dose. The poor little guy is such a GRUMPY boy on steroids (not all day, but a lot of it!) I hope this rejection clears up soon! We are also going to be doubling Mason's monthly IVIg treatment that he's been getting since Jan 2012 for the Parvovirus because the higher dose will also be beneficial in treating Mason's antibody rejection. His amount of donor specific antibodies (DSA's) is pretty high right now. Guess this shows a transplant recipient is never out of the woods.

But, I am just so grateful we caught this rejection before it was severe and/or affecting his heart function!

Monday (April 8) Mason will go in for another back rod expansion and while we stay over night he will also get his next IVIg treatment. Please remember him in your thoughts prayers to conquer this rejection and that all will go smoothly in the operating room on Monday. Although it will be a minor trip to the OR it never gets easy to say goodbye before any surgery!

Our family had a great Easter! Here are a few Pictures.....

The  younger boys were excited to wake up and see.....

what the Easter Bunny brought!

And, the older kids......not so much! 

They would've rather slept in!!!

 

I attempted to take pictures of the kids before church,

but I think they'd all had a little too much Easter candy!

Easter turned out to be a beautiful warm

and sunny Spring day.

It was perfect for an Easter egg hunt with family,

just hanging out in the great weather,

or even a little squirt gun fight!

In fact I think Mason's favorite part of Easter....

was the chasing after everyone with his squirt guns!

For every holiday we spend together as a 

family we are truly grateful!

Happy Spring!

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.)

UNEXPECTED AND EVENTFUL

 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!

ONE VERY BUSY MONTH

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.....

BRAIDEN

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.)

AMMON

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.