Monday, March 28, 2011

Jr Pilot Award

Yes we made it home safely Friday night. I am very sorry for not updating sooner, coming home to our busy family found me with no time over the weekend to sit down at the computer.

While at the airport waiting to board our flight home I spoke with Stanford's transplant team over the phone. It was refreshing to hear good news. Mason's biopsy showed NO AMR or antibody mediated rejection. Which was surprising, because usually that is the type of rejection he's been more inclined to have in the past. Poor kid having gone into his transplant with a history of high percentages of antibodies will probably have this type of rejection pop up every once in awhile forever, but not this time! yeah!

The docs' plan of action for Mason to conquer this 1A rejection is as follows: Since there was noAMR he can come down slightly (and I mean ever so slightly) on his steroids, but not start a taper to come off until after a zero biopsy. The next one will be in June at Primary's. Because, he does have CMR or cellular mediated rejection he will go up a little on his Cyclospirine (anti rejection med -the one that makes him a hairy little teddy bear). The only true bummer about that is more blood draws. This is the med that you only know if he's getting the right dose by checking the level in his blood. After the blood tests come out a few times in a row at the correct level, then blood draws can start to spread further apart. We were finally at that point and had gone a whole 4 weeks without a blood draw before we got to Stanford. Hopefully we can get back to that again soon.

What was the "speed bump" in the cath lab? Mason's Femoral Arteries are occluded (closed off). Sometimes this happens to little heart kiddos like Mason from having so many caths. Why is this a problem? There are only two places which the catheter can be inserted and then threaded up to the heart, either through the femoral artery in the groin area or through the right radial or brachial artery (hand or arm). But, the hand or arm are not used in children because those arteries are too small. Without access through Mason's femoral arteries an angiogram cannot be performed. An angiogram is when dye (contrast) is injected through the catheter and followed on x-ray. This is the best way to make sure the coronary arteries are working well with no blockage and to check the blood flow in the pulmonary arteries and veins. So, Mason was not able to have this part of the cath. Dr. Peng (Cath Dr.) was able to insert a catheter (bioptome) into his femoral vein to read the pressures in the right side of his heart and to perform the biopsy. (Biopsies are performed by accessing either there or through the the jugular vein in the neck.)

Although Dr. Peng gathered enough information to check for rejection and to make sure Mason's right side of his heart is not being over worked (which could happen from being basically one-lunged), Mason still needs a way to have his coronary arteries checked. Coronary artery disease can be common among transplant patients especially those born with a congenital heart disease. Mason's transplant doctors from Stanford- Dr. Chin and Berstein, are discussing with his transplant doctors at Primary Children's- Dr.'s, Everett, Molina, and Tani different methods to now check on Mason's coronary arteries. Like I said, a speed bump.

Besides the disappointment of not getting full results of the Mason's heart cath, Mason's poor little groins were "beat up" during the cath. They attempted several times in each side to insert the catheter into his femoral arteries, with nothing to show but lots and lots of bruising. With all the many times Mason has been accessed through his groin area this was the first time he acted like he was in a lot of pain after the procedure (and even days after he's still telling me "ouch"). This was one of those 'Mommy Tears' moments that I ask myself, "is this really fair to put him through?". Then I take a tearful breath and tell myself "I know he'll let me know when he's had enough!"

I've decided after this trip, Mason should be given the "The Best Jr Pilot" award if there were such a thing. He was so well behaved on our flight to Stanford and on our flight home. Most people that sit near a toddler are worried that they are in for a loud non relaxing flight. But, Mason shocked everyone around us. On both flights he spent the first 10 minutes helping me wipe down our seats etc with Lysol wipes , then just looking out the window and asking me questions. After that, he put his blanket on my lap, laid his head down, said "night night", and slept until it was time to get off! Several people commented "oh what a good little boy." I said, "thank you", and then said to myself, "I guess flying on a plane doesn't scare him because he's been through so much worse!!" It's just too bad he doesn't sleep like that at home!

Some of our blog followers have asked me what I do to protect Mason from all the germs on the airplane still he is still quite immune-suppressed. If he'll leave a mask on, then that is a bonus lately. My first trick (which makes sense to me at least) is to either board first and sit in the very back, or board last and sit in the very front. That way all the people don't have to walk past us. Next of course, wipe off everything around you with Lysol or Clorox wipes and keep your hand sanitizer close by at all times. Other than that, say a prayer!

Here is Mason after his nap on the way to California:
I couldn't get a smile out of him. He was too sleepy!

Next on our agenda is IVIG at Primary's all day on Thursday, because our insurance wouldn't pay for Mason to have it done while we were at Stanford. (Don't even get me started about our insurance issues!!!) Thank you for all your continued prayers and love.

"It's the journey that matters not the finish line."

Thursday, March 24, 2011

Dancing in the Rain

(Sorry for the delayed update. I started this last night, but never finished it.)

After I got the awaited phone call this afternoon (Thursday) from Nancy, Mason's transplant nurse, Mason and I went out for a walk and got caught in a big rainstorm. I pulled out an umbrella from the stroller to try and protect us from getting all wet, but the wind picked up and blew that poor little umbrella to pieces. Mason began to laugh at the sight of our strangled umbrella. Then he looked up into the sky letting the rain hit his face and laughed even more. At that moment Mason helped me remember one of my favorite quotes.............

“Life isn’t about waiting for the storm to passit’s learning to dance in the rain.”

I wouldn't say the phone call brought a big storm into our life, just some unexpected light rain showers. Mason's biopsy came back so far as a 1A rejection due to cellular mediated rejection. They are still waiting to see if he has any antibody mediated rejection as well. Those results should be back sometime on Friday. What does this mean? It's obviously not that beautiful zero we were hoping for, but 1A is not too bad. Mason has some mild rejection beginning to attack his heart which can usually be treated by some adjustments in his medications.

I'm still waiting to hear the docs' plan of action. Most likely Mason will not get to wean off his steroids quite yet as we had been wishing for, but at least this news will not require a hospital admittance. We all know (including all of you amazing blog followers) that Mason is truly Miracle Mason, but he does usually have his own agenda and plan to send us a few curve balls or speed bumps along this journey. I will not complain about these results. Instead I will dance with Mason in the rain to celebrate how far he has come this last year with his new heart!

In consideration of all of you anxiously awaiting this post, I will end now. But, when I receive more news from Mason's doctors I will update again. In that post I will also tell you more about Mason's experience in the cath lab and an additional little speed bump that has popped up in his post-transplant chapter of life. As always, thank you for your continued prayers, love and support! I know I'm never alone even when Mason and I are away from our family.

Wednesday, March 23, 2011


Sorry I didn't update sooner, but as soon as Mason came out of the cath lab he was in need of lots of snuggles. The findings during the cath were good. The pressures in Mason's heart were within normal range. His left pulmonary veins are definitely closed off, but this does not seem to be causing any issues with the function of Mason's new heart. This is fabulous news! Mason is doing so well with just one functioning lung it is amazing!

We finally left the hospital at 7pm, 12 hours after checking in for Mason's procedure. It was a long day and my little miracle boy needs some more snuggles, so we are going to try and get some sleep.

I will update tomorrow night with results on the biopsy and give more details about today's cath.

Thanks for all your prayers and happy thoughts today.

Cath Lab

Saying goodbye in the cath lab to Mason NEVER gets easier. I know he's in good hands, but still!!

They got a late start on Mason today. Part of it was just due to the pre-op department being very busy and then Mason's port was giving us issues as well. It was flushing fine, but not drawing back blood. The cath team decided they would fiddle with it in the lab after he was asleep.

They finally started the procedure around 9:45 am and it is now 11:10 am and I'm anxiously awaiting to get back to Mason.

Please pray for Mason at this time and that this will be a GOOD NEWS day.

Tuesday, March 22, 2011

Tomorrow is a BIG DAY

Mason and I (Mom) made it safely to Palo Alto Yesterday.

It's always a challenge to get through airport security with all of Mason's liquid meds and cans of formula...but it's getting a little easier each time, because I know the routine now. I always feel bad for the people behind us in the security line and wish I could just wear a sign on my back that reads "sorry for the hold up, but my son is a heart transplant kiddo and takes oodles of liquid meds and uses a feeding pump". It always feels like a great success when we finally get through!!

It has been a refreshing visit to this beautiful town. Spring is here with gorgeous flowers everywhere. (Unlike Utah that always has trouble figuring out it's spring until it's too late and our tulips freeze!) It brings back such special and emotional memories of last spring when Mason was given new life just like the blossoming angelic new springtime flowers that are in abundance here right now.

Okay, so tomorrow is not as big a day as any of Mason's 3 open heart surgeries...... and especially not as big a day as receiving his new Angel heart on Easter Sunday, but it is still a big day!

It has been almost 3 months since Mason's last biopsy. Even though he seems to be doing great and showing no signs of rejection, there is still the possibility of rejection being detected from the biopsy. This means I am nervous! It would be so so so great to get the news of ZERO rejection for this one year biopsy so Mason can finally start weaning off some of his meds. What is needed right now: PRAYER. FAITH. HOPE.

It is also a big day because Mason will be having a full heart cath. From this we will find out how well Mason's heart is functioning and also what is going on with his pulmonary vein stenonis. More PRAYER, FAITH, and HOPE is needed to bring good news. Mason is our miracle boy so I know he'll be closely watched over and protected in the cath lab tomorrow.

I will update as soon as possible after Mason's cath tomorrow.

Thursday, March 17, 2011

Stanford Here We Come

Mason is loving the nice weather. But, we've come across a certain issue with him......... He never had to be taught to stay out of the street before now! He wasn't ever healthy or strong enough to go out and play with the other kiddos. Our street is rather quiet and all the older kids play in the street; ripsticking, skateboarding, riding bikes, playing kickball etc, but Mason doesn't understand to get out of the way when cars come. He thinks he can be out there with everyone else riding his little bike (or rather pushing with his feet) right down the middle of the street. It's like teaching a dog something he should have learned as a puppy! What to do???? I will say though, It is very exciting to see him finally outside playing with the other kiddos!

Next week we head to Stanford for Mason's one year post transplant biopsy and heart cath. It will be just 10 days before his actual Angel Heart Birthday. It seems like a dream. It seems surreal that a year ago at this time we thought we'd be waiting several more months for his new heart. Daily, I prayed with every part of who I am, with every single bit of FAITH and HOPE that I could find within me that my Mason would live long enough to receive the gift of a new heart! And's almost been beating within him for almost a year! Prayers were answered and prayers are still answered. He is doing amazing well. The first year post transplant is very critical....and Mason has endured fighting like a champ.

Mason and I will be in Palo Alto Monday through Friday. His big day at the hospital will be Wednesday March 23. This heart cath will tell us, as all other biopsies have about rejection, as well as how healthy his heart is ; checking blood flow in his pulmonary arteries and veins and pulmonary pressures. I am nervous to hear about his left pulmonary veins with the stenosis. I just pray and hope it is not causing any problems to his new heart.

The news of this biopsy and heart cath will also dictate whether Mason can start coming off his steroids and some of his other meds. I sure hope the answer is yes! I'm ready to get Mason off these "grumpy" steroids and to start taking him more places. Right now the only place in public
we still go is just to the hospital. It's time he can explore life just a little more! Please join us in prayer for ZERO rejection and a healthy "good news" report next week.

A special thank-you to an anonymous friend who donated sky miles to us for our trip down to Stanford!!! What a pleasant surprise. I am absolutely grateful for this kind gift. I was concerned about adding the cost of our plane tickets to all of Mason's unpaid medical bills (which I think may take my whole lifetime to pay off, but I don't care because my baby is alive!!!), so again thank-you, thank-you, thank-you to our special secret friend.

It's been a while since I've left you with a quote or two, so today I will. I've been thinking a lot lately about persevering and enduring through trials and just crazy life period..... Of which Mason is definitely my example and hero. Here is what I have to share:

"In 1968 a marathon runner by the name of John Stephen Akhwari represented Tanzania in an international competition. 'A little over an hour after [the winner] had crossed the finish line, John Stephen Akhwari . . . approached the stadium, the last man to complete the journey. [Though suffering from fatigue, leg cramps, dehydration, and disorientation,] a voice called from within to go on, and so he went on. Afterwards, it was written, "Today we have seen a young African runner who symbolizes the finest in human spirit, a performance that gives meaning to the word courage." When asked why he would complete a race he could never win, Akhwari replied, 'My country did not send me 5,000 miles to start the race; my country sent me to finish the race.'

"He knew who he was—an athlete representing the country of Tanzania. He knew his purpose—to finish the race. He knew that he had to endure to the finish, so that he could honorably return home to Tanzania. Our mission in life is much the same. We were not sent by Father in Heaven just to be born. We were sent to endure and return to Him with honor." (
~Elder Robert D. Hales)
"Patience means active waiting and enduring. It means staying with something and doing all that we can—working, hoping, and exercising faith; bearing hardship with fortitude, even when the desires of our hearts are delayed. Patience is not simply enduring; it is enduring well!" (~Elder Dieter F. Uchtdorf)

Thursday, March 3, 2011

Happy Birthday Big Brother Ammon!

(Ammon loves the bus that picks him up everyday for school!)

Last Sunday (Feb. 27th) was Ammon's 6th birthday. It is so hard to believe how fast my kiddos are growing up! I can clearly remember the day sweet Ammon was born like it truly was yesterday. It was a surprisingly warm day for February and he came 3 1/2 weeks early bringing lots of extra sunshine into our lives! How does time fly by so quickly?

Our dear Ammon was born with his own set of challenges. He is developmentally and intellectually disabled. He has come a very long way through the help of early childhood intervention specialists, an amazing special ed preschool teacher and preschool therapists, and now this year he is in a great small group special ed kindergarten along with one on one therapy sessions. He is such a loving boy, although his non-stop energy definitely tests my patience. All I want for him is to feel loved back and to feel like he fits in with the other kids in his age group.

(This was a couple weeks before we left for Stanford last year.)

When Mason was born and I spent the first 7 weeks of his life at the hospital with him everyday, Ammon's world got turned upside down. Bless his sweet little heart, because he truly didn't understand why this new little baby was stealing all his Mommy's time. And it's been this way for 3 years now! But, he does so love Mason despite the natural jealousy that comes in a situation like ours. Ammon is such a happy child, and even though he has challenges that make him different than other kiddos, he loves and spreads sunshine to everyone!!

We took Ammon last Saturday to Monkey Island in Lehi for a little party. It is a newer indoor playground with lots of blow up slides and jump-houses. (The owner was kind enough to open up early for us so that we could take Mason and not worry about germy crowds!) It was the perfect place to let Ammon and our other kiddos burn off their bottled up winter energy.

Ammon is still Buzz Light Year's number one fan, so on his birthday we celebrated with a home-made Buzz cake. As long as it's any thing Buzz or Toy Story he likes it!

Dear Ammon,

I want you to know that you are a
beautiful blessing in my life. You
are a great example of Love and
Happiness to us all! I am so proud
of you for trying so hard in school &
for being so kind to those around
you. I hope you know how very
much you are loved by your family!
Happy Happy Birthday!!!

I Love You,


ps. Always remember for Mason no news is good news! I'll update soon about Mason, but for now we are planning on going to Stanford the week of March 22 for his ONE YEAR post transplant heart cath.