Miracle Mason

PARVO, COOMBS, ENT, C-PAP, BI-PAP, CBC, RBC, HEMOC.....

2012-01-23T09:48:00.000-07:00

.......are some of the medical acronyms which describe Mason's last 2 months. In the last 4 years the medical terminology that I've become familiar with far exceeds the amount of Elem. Ed. terminology I learned during 4 years of college. Who would've known?!!

Mason, my HLHS (Hypolpastic left heart syndrome) postX (transplant) miracle son with complete LPVS (left pulmonary vein stenosis) has taught me a lot about the CHD (congenital heart disease) world and far beyond. He has never been a "text" book HLHS kiddo. He certainly beats his own drum and walks to his own agenda, but his amazingly strong fighting spirit has taught me the most about this experience.

So on to the most recent medical acronyms......

PARVO: Mason's blood work the week after Christmas showed he was positive for the Parvovirus. More commonly in kids known as Fifth disease or "slapped cheek" disease. It's symptoms usually are sore throat, runny nose, fevers, and red cheeks. BUT, in an immune compromised kiddo like Mason it can cause anemia.....where the body's production of oxygen- carrying red blood cells (RBC's) is slowed or even stopped. So the belief is that PARVO is what caused Mason's dangerously low level of RBC's before Christmas, and stopped the production of new RBC's for some time as well. The blood transfusion brought up his RBC's to a healthy level and kicked started production of new RBC's. But......did it solve the problem completely? We'll just have to wait and see.......

COOMBS: Mason also tested positive after Coombs blood work was done. The Coombs test looks for antibodies that have attached to the red blood cells, in Mason's case, after a blood transfusion. Even after a very careful blood typing cross-match is performed prior to a blood transfusion sometimes the match is not completely perfect and the body recognizes the new blood as being foreign. And of course because we are talking about Mason.....the match wasn't perfect this time and his body made antibodies to fight against the new blood. Possibly these antibodies can kill of his new red blood cells which would definitely defeat the whole purpose of his bloods transfusion! Also, an important factor is that now Mason will need even more specific cross matching done if he ever needs blood products again in the future to avoid these antibodies.....making the donor pool he can receive blood from pretty small.

ENT: Mason had an appointment with the Ear Nose Throat doctor on January 6th. This was to discuss if anything surgically could be done to help Mason's airway obstruction sleep apnea, such as the removal of tonsils and adenoids. As much as I wouldn't wish this surgery on anyone it truly would've been nice if this was the answer to help Mason sleep better. Although, Mason's tonsils and adenoids (adenoids were looked at by x-ray) did not look enlarged enough to be cause of the problem, so removing would be pointless. Bummer!! What does this mean? Mason will most likely need to sleep with a C-PAP or BI-PAP machine. For right now we are waiting to get back in to discuss his apnea with the sleep doctor. Our appointment is in March, but we are on the waiting list to see him sooner. Mason presently sleeps with an O2 blow-by mask near him, because I don't have it in me to force the cannula on him. He refuses it so I figure I'll just wait to see what the sleep doc says. This means though that I have to move the mask near him every time he moves in his sleep...... not a very convenient or sure way to help him sleep better (or me)!

CBC: Mason has had weekly blood draws to check his CBC's (complete blood count) mainly to watch if his body has been able to keep his RBC's up in the healthy normal range. Also the CBC is used to watch his WBC's (white blood cell count), because when he was switched to Imuran instead of Celcept for one of his anti rejection meds, that his how the docs monitor if his Imuran dose is correct by watching his amount of WBC's. Although that was very short lived......Mason was switched back to Celcept 10 days ago because it is supposed to be better for heart transplant rejection and the belief is that the PARVO caused his red bloods cells to plummet not the Celcept after all. So how are his RBC numbers???? For the first two weeks after transplant they were great, but now they are starting to drop again :-( and he's looking pale once more. Mason has also had CBC with retic counts done which checks to see if the body is making new blood cells. He is making WBC's within in the normal range and he is also making new RBC's, but below the normal range of how much his body should be producing.

HEMOC: Mason has an appointment with the doctors who study blood, Hematology/Oncology, this Tuesday (tomorrow). It was just supposed to be a follow up visit from Mason's overnight stay in the hospital for his blood transfusion when we met with them, but now it will probably be more than that because his RBC's are dropping again. This will most likely mean more blood work. Poor little Mason! Let me tell, he has become so brave and tough at his blood draws. When it it is a finger poke he doesn't even shed a tear or even when it is just a small amount of blood needed from a vein draw, but.......some of his blood draws lately have needed up to 20cc's of blood! That is a ton from a 23 lb little kiddo and usually that requires two vein pokes because the first vein runs dry before they get enough blood. Hopefully soon we can get to the bottom of Mason's low RBC's issue, help the problem, and back off on all these blood draws.

The good news is that through all the blood issues and sleep apnea......Mason's ECHO'S continue to show a healthy heart with great heart function. And for this we are forever grateful to Mason's special heart donor. His donor has chosen to remain anonymous, but this doesn't mean we don't thank them daily in our prayers for the great gift they gave our family and think about them all the time! Mason's next Cardiology-Transplant clinic is this Thursday where we hope to hear continued good news.

Besides all the medical "stuff" that fills up our time, our holidays were fun and eventful. We were even able to spy on Santa early Christmas morning as he dropped off our gifts, much to Mason's despair though! He is quite scared of the Jolly 'Ol Fellow. We also took Mason to church for the first time ever on Christmas. It seemed like a day we needed to be at church all together as a family (usually Mark and I trade off staying home with Mason), and since it was just an hour long that day it seemed like the perfect time to try. Mason was a good sport and sat in our laps the whole time with his mask on.

A few pictures from Christmas......

(Christmas Eve)

(We spyed on Santa delivering his gifts.)

(Ammon)

(Braiden)

(Preston)

(Kaitlin)

(Mason)

( Taking a family photo with everyone smiling.......

is almost impossible!!! But, at least we try!!! )

(Ammon)

(Braiden)

(Preston)

(Sammi and Kaitlin)

(If you are a newer follower of Mason's journey,

Sammi moved in with us in February 2010 to play

"Mom" while Mason and I lived at Stanford for his

heart transplant. She still lives with us and helps out

when she can. She is in nursing school and nanny's for

3 other families, but continues to be an "angel" in our

lives. We were glad she spent Christmas with us this

year. Thanks Brad and Lolly for letting us adopt her!!)

(Mason and Braiden)

(Ammon and Mason)

Thank you for continuing to follow and support Mason's journey. I will update soon after this weeks doctor's appointments. I promise to try and be more diligent in my blogging.....during the holidays a few curve balls were thrown my way to deter my blogging ability. My laptop was in the shop for 2 weeks and our washing machine flooded our house leaving lots of damage, but never the less life goes on and it's a NEW YEAR!

MERRY CHRISTMAS

2011-12-24T14:45:00.003-07:00

Hooray! We made it back home in time for Christmas. We want to wish all of you a very merry Christmas!

This

Year at

Christmas time

we certainly have a lot

to be grateful for! First and foremost,

we are grateful to be together at home celebrating

the TRUE REASON for this special holiday season, thebirth

and life of our Savior. Here are some of the other things we are

thankful for this year: Kaitlin ( 7th grade) – Dance, skiing, cousins,friends,

fashion, and shopping. Preston (5th grade) – baseball, lacrosse, skiing, friends,
mountain biking, and long boarding. Braiden (3rd grade)- baseball, skiing, more
baseball, mountain biking,and did I already say more baseball? Ammon (1st grade)

Caliou, Curious George , Buzz Lightyear, and Mom andDad are grateful that I continue

to progress (just at my own speed of course!). Mason(preschool)- life, watching big bro’s

play sports, baseball, football, policemen, & myteachers and therapist who visit me at

home. Dad- good jobs, biking, our 2 vacations this year (SunValley Ski Resort & Cali-

fornia beaches), helping coach baseball, & family. Mom- staying home with her five

Kiddos, running,family, Mason coming off of steroids finally, & naptime snuggles.

We wish you peace,

love, hope, joy, a

MerryChristmas, and

A Happy New Year!

Recipe for Rosier Cheeks

2011-12-22T14:59:00.000-07:00

Mason's red blood cell count actually had dropped even more from last week when yesterday's blood draw results came back. Thus, the transplant team had us come up to Primary's late yesterday afternoon to be admitted overnight for a blood transfusion and some more testing. This definitely wasn't on my "to do list" this week to get ready for Christmas, but better now than on Christmas eve!

Today Mason has rosie cheeks again and seems to have more energy. I hadn't realized how pale he had really gotten until he woke with nice pink coloring today. The transplant team decided to switch him from Cellcept to Imuran in hopes Cellcept is the culprit of his suppressed red blood cells. Hematology is also looking at all of Mason's labs to see if they can find anything different or in addition that could be causing this. We will continue to follow up with Hematology in January.

We would have gone home early this afternoon today except Mason spiked a fever! Of course, right?! It most likely is a reaction to his blood transfusion, but they are keeping us here probably until sometime tonight just to make sure. We hope to get home to our family soon to finish getting ready for Christmas!

Thanks for your thoughts and prayers! Enjoy you Holidays!

Never a dull moment......

2011-12-19T21:52:00.003-07:00

Happy holidays everybody!!! I'm sure most of you are busy getting ready for that special day coming this Sunday. I just want to take a moment to update you on Mason and share a few pictures.

Where do I begin? I am not sure, because I have been taking too much time in between posts! And then I've been wasting time trying to fix Mason's birthday post that has a complete mind of its own. It adds in strange spacing after I hit "publish" every time. Well, on to the update........

December 1st Mason had transplant clinic at Primary's. His echo showed great heart function and his trucuspid leak remains mild to moderate. Which is absolutely wonderful, because during, and for a while after, his bad case of pneumonia in June his leak was severe. Mason also had gained a whole pound in one month! That's huge for him! (He's not like most of us who can just look at a piece of chocolate cake and gain a pound!)

...then came the not so good news of the day.....Mason's sleep study report. He has moderate to severe sleep apnea and restless leg syndrome.

What does this mean? For the wiggly leg issue the answer is the easier of the two. The docs upped his iron intake quite significantly (which in turn may also help with his too many loose stool diapers.....and help his weight gain). Right now for the sleep apnea, Mason needs to be back on O2's at night. He is such a stubborn little stinker that he rips the cannula off about an hour into the night (do you blame him? He dealt with that long enough already!), so I turn the concentrator up 4x the amount he needs and use a "blow by" cannula near his face. That works well until he turns his head during his sleep! In January we will see an ENT to find out if removing his tonsils and adenoids will help with the apnea. (This is quite common for transplant patients, because of the meds they have been on, which can cause swelling, sometimes the tonsils and adenoids remain enlarged even after coming off of those meds.) My hope is that this is the answer, so that Mason does not have to be on a c-pap O2 machine at night.

Mason has also had a cold for the last 3 weeks or so, but last week it got much worse. Tuesday he woke with his eyes glued shut with green gunk and his nasal drainage kept getting greener and greener. I tried prescription eye drops for a couple days, but then Thursday night he spiked a fever of 103 and was very lethargic. Friday morning we made a visit to the pediatrician. No strep and no ear infection, but it appeared Mason had developed a nasty sinus infection. As much as I didn't want to put Mason on another antibiotic because of his poor little tummy issues, that's what we did. His cold had remained too long, only getting worse. It needed to be treated before it settled next in his lungs.

All the above I can handle just fine, but then Friday (Dec. 16) soon after returning home from the pediatrician, I received a call from the transplant team at Primary's with results from Thursday's routine blood draw (If we don't have a clinic visit I take Mason to Primary's Riverton offices and lab for his weekly blood draws. It's much closer!). It was RN Emily. First she asked how Mason was doing. I told her about the fever, the doctor's visit, and I also mentioned that I was going to call them today to tell them that Mason's BP has been lower than normal. She told me the lower BP makes sense with his lab results. His RBC (red blood cell count) is way too low. It has lowered significantly in the last week despite the high amount of iron he is taking. I said to her "I guess that would explain why he's been so pale" (I just thought it was his cold combined with the winter time-no sunshine). Then came the unexpected news........she said the team was concerned enough that they wanted me to bring Mason in right away for some more testing.

Not really in my plans for the weekend; I packed us an overnight bag, made plans for my other kiddos' care after school, and headed up to Primarys. The entire 45 minute drive, my mind was racing...... thinking of ideas of what could be wrong with little Mason now! I tried not to even think this, but transplant patients always have the possibility of developing autoimmune disease and/or cancers because of their anti-rejection meds. As my eyes filled up with tears of concern and worry, I prayed for positive thoughts and comfort.

Upon arriving Mason had more blood tests and a complete echo. 5 hours later...........after his echo showed good heart function and no changes, and a doctor's thorough exam, we came up with a plan that would allow us to go back home (for now), but be followed very closely. From a heart-lung stand point Mason is doing just fine despite what is going with his RBC's right now. If that was not the case they would have for sure admitted him. The additional blood work showed that Mason's bone marrow is not making new red blood cells. Not good. But at least it is still making platelets and white blood cells (which if not this would lean us towards thoughts of cancer, leukemia, or other major illnesses).

What could be the cause and what next? Celcept, one of Mason's anti-rejection meds, can cause this if the level of Celcept he is on is too high. But that is one the levels we check in his frequent blood draws, and it is not too high right now! The hope is that possibly a virus (his three week long cold) in combination with being on Celcept, has stumped his red blood cell production. The docs cut his Celcept dose in half in hopes this would help his body restore its red blood cell making ability. Although doing this is kind of a two edged sword.....not enough Celcept could cause rejection! Yikes! Mason will have more blood tests on Wednesday to see if his red blood cell count has gone up. If not, he may be admitted for a thorough hematology work up!! Pray with us please for more red blood cells and no rejection! Mason for sure does not want to spend Christmas in the hospital!

Birthday Pictures:

Mason opened up new pj's the night before the big day.........

and then he woke to a room full of birthday

balloons and streamers from the "B-day Angel"!

Mason had a very happy day! Most of it spent

cruising around the house on his plasma car.

(The car was not a b-day gift. He's had it quite

awhile, but he loves it and rides it all the time.)

Besides baseball and football Mason also loves policemen.

So, he wanted a police car cake...... and he got it!!!

Mason couldn't wait to play with his cake topping!

All Mason wanted for his birthday was a baseball helmet.....

and batting gloves like his big brothers.

That was definitely easy enough for me !!

Thank you for your prayers and love! Hope you are enjoying this holiday season with your families! I will update with news soon about Mason's newest issue of the "diminishing red blood cells".

Happy 4th Birthday Mason!

2011-11-30T06:10:00.000-07:00

mir·a·cle:  "A surprising and welcome event that is notexplicable  by natural orscientific laws and is considered to be divine." (~Webster dictionary)

mir·a·cle: Mason Andrew Strickland celebrating his 4th birthday.

Mason has defied all of the odds, laws of nature, medicalexplanations. Mason is one determined little boy with a special mission here onearth. We may never know what exactly his mission is, but he certainly hastaught us all lessons about faith, hope, prayer, charity, endurance, joy, priorities,love, patience, and so much more.

We do know the miracle that Mason is, and the many miracles thathave blessed his life, have been given to us by our divine Heavenly Father, theGod of all Miracles. He has led and guided the numerous doctors and nurses thathave taken care of Mason along this journey. He has held my hands though allthe tearful and scary times, making sure I have never been alone. He hascomforted Mason and our entire family through the many speed bumps we haveencountered. He has sent many many "angels" by way of family,neighbors, friends, and strangers to help us these last 4 years. For Him, allof Mason's caregivers, and our "angels: I am grateful beyond words. . I amtearful today thinking and writing about ALL that has been given us and howtruly blessed we are!!!

Today my heart is very full!

Full of:

GRATITUDE

JOY

LOVE

HAPPINESS

BELIEF

Dear Mason,

I want you to know how very happy Iam today to celebrate this 4th birthday with you. In fact, better words wouldbe... over-joyed and emotional. You are well deserving of a very happy day! Youhave been through so much in your short life. More than most of us will everunderstand or experience! It's hard to believe that it was four years agotonight that you came into our world. Although the journey at times has seemedlong, it does not seem like four years has gone by. You are the sunshine in ourfamily. You help us realize that we need to be happy just be alive! Your loveof life is very special and contagious. Mason, your personality is one of kindand so absolutely fun. Your smile is radiant and beautiful. Your spirit andcountenance is like that of an angel. I feel so lucky that you call me"Mom"!

Love and Hugs Forever,

Mom"

One of myfavorite quotes that I've posted before, but want to post it again because itso fitting on this day!.......

“Thereare two ways to live: you can live as if nothing is a miracle; you can live asif everything is a miracle." (~Albert Einstein)

Happy Happy 4th Birthday Miracle Mason!

Halloween 2011

2011-11-23T05:57:00.001-07:00

Late, as usual these last few months, but here is our Halloween 2011 post........ (In fact, it's so late it's just in time for Thanksgiving!!)

Halloween was a fun day and night at our house. Always a busy day with parades at school and class parties (especially with my kiddos at 3 different schools), but memorable none the less! Mason definitely understood much more this year about what was going on.........dress up "cute" (he told everyone they looked "cute") and then go out and collect as much candy as you can. Although, after awhile he decided he didn't really want to eat the candy (what kid doesn't like candy? Well, besides a heart kiddo with a a very miniature size appetite I guess!) he would take a handful of candy out of his bag and offer it to the person at door where we were trick or treating! Of course my other kiddos thought he was crazy to offer up his candy!

Mason was one very cute little skeleton.

Ammon went as an adorable "2 for 1",

Bullseye and Woody from Toy Story.

Braiden, our young sweet homeless boy, told

everyone he was a "hobo". (I'm honsetly not

sure how or when it started, but my kids have

always called homeless people hobos. Braiden

has always been the most fascinated with hobos,

especially after visiting downtown San Francisco

when Mason and I were at Stanford!

Kids are so funny!!!

Preston, dressed as one of the scariest zombies

I have ever seen. I heard all the kids at school

were freaked out by him! (Thanks to Sammi

who was his personal make up artist.)

Kaitlin was the prettiest Elmo Sesame Street

has ever known.

Carving pumpkins is always a messy yet fun

traditions at our house. (Notice, Mason in a

hoodie, diaper, and shoes......that's his normal

outfit lately, because his pants just won't

stay on his tiny little body!!)

My three oldest are stinkers about letting me

take pictues of them, but let me tell you.....

they had no problem playing with matches

to light up their jack-o-lantern's and then

taking my camera to get pictures of their

works' of art. Oh for the love of kids!!!

Mason was definetly ready for "trick or treating".

Ammon was not in the mood for pictures,

he just wanted to get out and collect candy!

Ever seen a cuter skeleton with a bigger smile?

Mason is busy most of the day cruising furniture or

crusing around the house with his reverse walker.

Not yet walking on his own, but he's definely proud

of his hard work and accomplishments!

Watch Mason in action.....

Way to go Mason!!!

HAPPY THANKSGIVING FROM OUR FAMILY TO YOURS!

"Ours is the responsibility to show our gratitude by the actions of our lives."
~Thomas S. Monson

"Despite the changes which come into our lives and with gratitude in our hearts, may we fill our days-as much as we can-with those things which matter most. May we cherish those we hold dear and express our love to them in word and in deed."
--Thomas S. Monson

Mason's Make A Wish Journey

2011-11-09T06:22:00.002-07:00

I think most everyone has heard of the Make-A-Wish Foundation, but if you haven't let me just tell you it is a very special and absolutely amazing foundation! It is a national foundation with most states having their own chapter. They are a non profit foundation which sets out to grant the wishes of children with life threatening illnesses. Their main goal is to give back to these children what there illnesses have taken away- laughter, strength, joy, and hope. In order to make this possible they receive a lot of help, volunteers, and donations from the community. Please click here to read more about what they do, some of the special children they have granted wishes to, and maybe how you can help too: http://utah.wish.org

I knew personally about Make A Wish because we've had two nieces and a nephew who were born with Muscular Dystrophy and have all been granted wishes. In fact, about a week before Mason was born our family had joined our niece Madeline at her wish making party. Never did I dream or fathom that my soon to be born little Mason would also be granted a wish someday! (Remember Mason was not diagnosed in utero with his heart disease!!!) Also, as I look back upon Mason's almost 4 years of life I cry thinking about the many miracles that have saved his life thus far, enabling him to even be granted a WISH!

In July Mason and our family received a visit from two wonderful

wish granters from the Make A Wish foundation. Sherrie and Jannessa

brought Mason some balloons and a bucket full of fun surprises. He

didn't know what to think or what was going on. But, he definitely liked

the new gifts, especially the baseballs!!!

During our visit they explained to us how the wishing process

works and shared with us a few wishes that other children have

been granted. One important step of being granted a wish

is receiving doctor's approval. Knowing this ahead of time, I had

already done my homework and discussed different options with

Mason's transplant team at Primary Children's. One very popular

wish is spending a week with your family at Disney World in Florida.

So I asked their opinion on Mason receiving that as his wish and

they said they were not comfortable with him traveling that far away

from Primary's or Stanford, especially with how sick his lungs got

this summer with pneumonia. Needless to say, my other kiddos were

disappointed about this!!! (But, hey it's Mason's wish anyways.)

(Mason and big brother Braiden playing a

little baseball during our visit.)

I had also already asked if Mason could wait to be granted

his wish until next year when he was a walking, talking more,

and further out from transplant. But, unfortunately with heart

transplant kiddos the protocol is within 18 months of their

transplant they need to receive their wish. So, we decided we

would take some time as a family to help Mason come up

with a wish ......keeping in mind he needed to have his wish

granted before the end of October.

Once Mason had a wish in mind (with just a little help from us)

we were to call his wish granters to let them know. They would

then schedule his wish making party at their Wishing Building

in Salt Lake City, where he would officially make his wish in the

special "wishing room". Following Mason's party his wish

would be granted soon thereafter.

Although........ as most of you know, Mason

doesn't usually like to follow normal guidelines.

Once I spoke with his granters about what we had decided,

we tried to set a date for his party. But, with fall sports and school

activities we weren't able to find a date that Make A Wish also

had open until October 7. Now here's the out of order non-normal

way of receiving a wish: On October 3 I received a phone call that

Mason would either need to have his gift installed on October 6

or not until the end of November, because the installers were

booked up! So if Mason wanted to enjoy what was to be installed

before it got too cold I definitely chose the earlier date. Thus,

Mason was granted his wish before he even really wished for it!

And, just one day before to be exact!

October 6, 2011

Mason watched for hours as his special wish was installed!

He was so very excited that he did not want to leave his

front row seat at the window. I knew then we had helped

him make a great wish choice!!!

Introducing.........."Mason's Park" as he calls it!

As soon as the play set was completely installed,

Mason said to me, " Jacket mom! Help me please! Go

swing now!" So we put on our jackets and out we went.

His smile couldn't have been any bigger!!!

While at Stanford before and after his transplant, Mason

and I would visit the park everyday, sometimes even twice

a day. His favorite thing to do was swing. Since we've been

home, life doesn't allow us as much time to visit the park quite

so frequently, but at brothers' baseball games this past year

you could always find Mason on the swing set. Even when the

games were over for the day he didn't want to get off his swing!!!

So now Mason has his very own park. Of course,

he is very kind to share it with his siblings and the rest

of the neighborhood. In fact, I'm thinking of making a

sign that reads:

"Welcome to Mason's Park.

You may stay and enjoy until dark

but, PLEASE remember to take

your socks, shoes, and jackets with you!"

Because, let me just tell you .........we have accumulated

quite a collection of homeless items in the last month.

(Ammon enjoys it just as much as Mason! Out to

the play set is the first place he goes after school.)

What a perfect wish for Mason! We couldn't be more

grateful for Make A Wish and their kind gift to

our one of a kind Miracle Mason!!!

October 7, 2011

Welcome to Mason's wish making party!

Mason was given a gift bag full of more presents from

his sweet wish granters. Of course lots of sports items!

The blue mitt was a big hit. And still is...

He sleeps with it every night!

We celebrated with yummy cake, chips and pop.

(hmmm....chips? His wish granters sure knew what he likes!)

Family and friends that joined us that night

signed Mason's pages in the Make A Wish scrapbook.

Each wish child gets their own star to hang up in the

Wishing Building. I was given the responsibility to write

on Mason's star. Each star is hand made from glass and

unique just like each child is so very special and unique.

It was a fun evening for Mason. Many of his cousins

were there to help him celebrate his wish.

Soon the time came to visit the "Wishing Room".

Mason was given his very own special key to unlock the door.

Everyone joined us in the room and watched as

Mason officially made his wish.

The room was almost magical with its

special lighting, music, and waterfall!

Mason placed his wish (written on a rolled of

piece of paper and inserted into a rod iron capsule)

into the top of the wishing wizard's hat. And then

the true magic began. The lighting in the room

began to change into all the beautiful colors

of the rainbow. Feelings of peace and hope

filled the room...........

Mason was definetly the shining star of the evening!

As you can see in the pictures,

he wanted to walk instead of being carried

the entire night! He felt like such a big boy!

(He's still needing assistance to walk, but soon

he'll be running around on his own.)

Hundreds of star hang from the ceiling on the

first floor of the Make A Wish building.

Everyone watched as Mason helped raise his star.

Mason's star now joins the stars of 3 of his cousins

and those of many other very special kiddos. Mason

is also invited back to visit his star and the wishing

room at anytime.

Mason will always hold a special place in his

heart for his wish granters, Sherrie and Janessa.

Thank you Make A Wish from Mason and our family for

the play set and a wonderful and very memorable evening!

Good bye Make A Wish! We will visit again soon!

A quick Mason update:

1)Two weeks ago we met with the nutrition clinic at Primary's to talk about how to put some weight on Mason. After running several blood tests and stool sample tests we sill don't know why he's had diarrhea since June! So now we are experimenting with different G-tube formulas to see if that will help. I prefer to do blended foods, but right now we are trying to see if he has some food intolerances and the easiest way to do that is by process of elimination. (We've already done food allergy tests, which all came back negative. But, sometimes there can still be intolerances.) They also started Mason on a medicine which should help increase his appetite so that he will take more in by mouth. So far it seems to have helped a little bit. He is down to 22 lbs and should at least weigh 28 lbs for his height! Part of the issue is also that he has become so much more active coming off the steroids..... thus burning a lot more calories.

2) At cardiology/transplant clinic that same day Mason's echo looked terrific! Although, his chest x-ray showed some haziness in the lower lobe of his left lung. Possible pneumonia would explain the persistent cough he'd had for 3 weeks. So he was started on an antibiotic. It helped the cough thank goodness, but only made the diarrhea worse (along with a miserable yeast rash). One step forward, two steps back! No, honestly I am so glad we got rid of his cough, before it turned into a pneumonia that checked him into the hospital!!!

3) Drum roll please............Mason is completely off of steroids! A long time we've been waiting for this. 18 1/2 months, that's all! Now we just have to pray he stays out of rejection so he can steer clear away from the "return of the steroids".

4) As I finish up this long post (it's only taken me two weeks), I am sitting next to Mason who finally just fell asleep (at 12:15 am, November 10th) as he is hooked up to at least 50 different wires in the sleep lab at Primary Children's. The transplant team has wanted us to do this since June to look for possible sleep apnea, which is frequently common among heart transplant kiddos. Mason has cooperated much better than I thought. With a just a few tears he let the techs hook him up without much of a fight. Wow he's come a long way with these hospital over-nighters! You are a trooper Mason!

5) Mason enjoyed a fun Halloween as a darling little skeleton. That will be my next post and hopefully you won't have to wait 2 weeks for me to post it this time.

A quote to leave you with:

“Hope is one leg of a three-legged stool, together with faith and

charity. These three stabilize our lives regardless of the rough

or uneven surfaces we might encounter at the time”

~President Dieter F. Uchtdorf~

Rain or Shine

2011-10-20T06:10:00.188-06:00

October 8th turned out to be a cold, windy, and rainy day. Not prime conditions for a day at the golf course! But, to no avail, RAIN OR SHINE, Mason's Third Annual Monster Tournament was a fun and successful event. Thank you to all those who helped make it happen! Thank you to the 60 golfers who pulled out their rain gear and came to the golf course to support us! Thank you to all those who donated prizes for the raffle and silent auction! And lastly, thank you to those who even though you couldn't make it, you donated to Mason's Trust/ Medical Fund! You are all so amazing to continually support Miracle Mason and his special journey through life.

Mason didn't care if it was cold out!

He just wanted to go OUTSIDE!!

As before, fun signs were put up........

around the golf course announcing .....

Mason's third annual monster tourney.

And of course,

Mason enjoyed some chips for lunch!

The silent auction items.......

and the raffle prizes.........

..........were a big hit!!!

Thank you again

to all those who donated items,

bought raffle tickets, and bid

on auction items!

Your generosity is deeply appreciated!

I'm not sure if Fox Hollow

will invite us back again

after all my kids took turns

behind the wheel of a golf cart!!

(Especially Ammon)

Mason received his first golf club

as a gift from a very nice golfer,

who won it in the raffle drawing.

Even Mason had a turn

driving a golf cart......

or was he driving that new golf club???

Either way, he had a great time

greeting the golfers at his very

own Mason Monster Tournament,

RAIN OR SHINE !

A Little Update About Miracle Mason's Own Rain And Shine:

THE RAIN.........As I type this (October 20th) Mason is by my side because he has been awake since 4am! He's been a bit under the weather for a week and a half with a runny nose and nasty cough. It started with a high fever of 103.5 which lasted for 2 days. Since then he's had a low grade fever of about 100.5 come and go. The cough has become so nasty that it causes him to throw up! Poor little guy! He needs to keep all the calories he can in him. (Throwing up is what has kept him up since 4 am today.)
THE SHINE.........after Dr Whiting (our pediatrician) checked him out I was left reassured that his lungs are clear still. The cough is just coming from his throat due to nasal drainage. Praying it stays that way, far away from his lungs, and will go away real soon!!

THE RAIN.........On October 3, just 4 days after Mason's biopsy, (when he got super nauseated and vomited all the rest of the day from the anesthetic), we returned to Primary Children's for a small dental surgery. Mason needed to be under the care of a cardiac anesthesiologist to have a cavity cleaned out and a crown place. So my sweet little guy was not very happy when he saw the "sleeping mask" coming his way again just four days later!
THE SHINE........Mason tolerated the anesthetic just fine and we went home just an hour and half after the dental work was finished, (unlike the 10 hours we were there for that last biopsy).

THE RAIN.........We have known since Mason was about 18 months old that his spine was a bit curved. We could tell by his chest x-rays and just by the appearance of his back. But, at that time survival was the main importance in Mason's life so we didn't worry about it. Now that his new heart is doing well, he has rejection under control, and the appearance of Mason's now obvious scoliosis continues to get worse- I finally took him to see an orthopedic specialist last week. (Well, after a three month wait to get in!)
I expected the doctor to tell me that he did for sure have scoliosis, but definitely not to hear he has it quite severe. A normal healthy spine has a curve of 0 to 15 % (maybe even 20%), but Mason's spine has a 60% curve! From his routine chest x-rays you could see the curve, but that day they took an x-ray of him standing up. And, it is pretty bad. The curve looks like an "S", the top of the "S"starting on near his left shoulder- curving severely towards his right lung (his only good lung) and then forming the bottom "S" curve- curving down into his left hip. I'll be honest. I was very sad to see this!!!
The main problem would be if the curvature worsens to 70 or 80% it could and most likely would affect Mason's pulmonary output. And, he only has that one good functioning lung!!! What can be done? Possible surgery when he's older (which I'm not a fan of), but for now, once he's walking he will need to be fitted for a back brace. This brace will need to be worn 16-18 hours a day for an indefinite length of months or most likely years. Walking may help lessen the curve some so that's why they want to wait until then. Mason is getting much closer to walking by himself ( He can push our Little Tikes shopping cart by himself!!!). I'm hoping by his birthday he'll walk, but our follow up with the orthopedic doc isn't until February. But really, a brace?? Hasn't Mason been through enough already?? I cried all the way home that day. Why? I'm not sure! Because he has endured much worse!! I guess it's just one more thing to put him through! My poor little superman.
THE SHINE.........He's still alive thanks to his still anonymous donor who I think about each and every day!

Walt Disney once said, “All our dreams can come true, if we have

the courage to pursue them.”

Stay tuned for my next post about Mason receiving his "Make A Wish" gift. I'm still gathering up all the pictures.

Simply Beautuful

2011-09-30T18:09:00.071-06:00

Fall in Utah is SIMPLY BEAUTIFUL!

The colors are bold.

The colors are happy.

The colors are beautiful.

I simply love the fall.

Nothing can compare.

Well, except......

Good News.

Good News is simply just as beautiful.

Mason's had more than his share of

not so good news in his short little life.

Thus when we get good news,

it is simply beautiful.

Mason's test results this time are SIMPLY BEAUTIFUL!

His biopsy came back a big bold beautiful ZERO!

And, his coronary arteries are healthy and happy!

I love good news.

It is simply beautiful.

NOTHING can compare!

Congratulations Miracle Mason!!

You are so brave.

You are so courageous.

You deserve this happy good news.

Miracle Mason,

You are SIMPLY BEAUTIFUL!!

Thank you for your love of life.

You are an amazing example to us all.

Mason's Monster Golf Tournament Is Here

2011-09-28T09:53:00.009-06:00

Mason's fundraiser tournament is just a week and a half away!! Here is the e-mail that was sent out by the founder of our annual event:

"Friends and Family,

I am putting on my Annual Charity Golf Tournament for my business partner's 3 year old boy Mason Strickland. Mason's story can be found at www.miraclemason.blogspot.com
Please join me and 144 other golfers to tackle one of the hardest golf courses you have ever played. This is for a great cause and those who have played in our event the last two years say it is by far the best tournament of the year. If you can not come but would like to donate prizes, gift baskets or anything else please contact me at cecildread@hotmail.com

Great gifts, great prizes and even a Greater Cause!!

   -Silent Auction
   -Gift Bags
   -Prizes
   -Contests

It sells out every year so please sign up right away, Don't Miss Out!!

Please bring a 4 person team on October 8th to the Fox Hollow Golf Course in American Fork, UT.

Please forward this message to any golfers that you may think would like this challenge.

Thank you,
Cecil Read"

If you can join in on the fun, please do!!! If you can't, then donate something to the raffle and auction!!! Your support is greatly appreciated it. Mason's bills continue to be overwhelming (ie: Just yesterday I opened a bill that is from Stanford for Mason's 1 year post transplant biopsy he had in March, that our insurance is trying to refuse responsibility of, and it is only a whopping $63,480!! yikes!!) but someday we hope we can donate the earnings from Mason's annual golf tournament to IHH (Intermountain Healing Hearts) our local congenital heart disease foundation. Because, Mason's bills WILL be more manageable someday!!

Thank you to Cecil and all those who make this a great and memorable event!!!

TOMORROW..........
is a big day for Mason. He will be having a heart cath/ biopsy at Primary Children's to check for rejection. It will be almost 18 months post transplant and his 13th biopsy. Of course we are praying very strongly for a big beautiful bold ZERO so that Mason can make his final taper off of steroids. Poor little guy has been on steroids for 18 months! That's not the usual protocol for transplant patients. Most are off the yucky steroids within 6-10 months post transplant, but of course Mason chose a more difficult path!

Mason will also be having a cardiac stress MRI to look at his coronary arteries. Normally coronary arteries can be looked at and assessed during a heart cath, but in March down at Stanford the cath dr discovered that both of Mason's femoral arteries are completely closed off. Thus it is impossible to look at his coronary arteries that way anymore! Accelerated coronary artery disease is frequently seen in transplant patients so that's why it is very important to follow Mason's coronary artery function. It has been at least 15 months since Mason's CA's were assessed so I am nervous.

I am probably more nervous than I would have been, but just two days ago our sweet little heart buddy Kaidence was diagnosed with Coronary Artery Disease! Kaidence has been our heart transplant hero and example since Mason was a newborn. She received her heart 2 days before Christmas in 2007 a couple weeks after Mason had his first open heart surgery. Her mom and I became good friends as we spent our days together in the hospital for 7 weeks. Kaidence was the first heart transplant patient I followed and I witnessed the miracles of new life that it brought to her. Kaidence and her mom Shauntelle were also at Primary's 2 years ago the day I was told Mason would not be able to get a heart transplant (little did the dr's know that Mason was not giving up!!!) and his months left to live were numbered. Oh how I was grateful to have her shoulder to cry on!!! Now today I cry in sadness for the news of sweet Kaidence. Please remember her in your prayers as well. (To read more about our dear friends visit: 4myKaidence.blogspot.com)

Thank you to all of you who continue to support and pray for our Miracle Mason. I will post with results on Mason's biopsy and MRI as soon as I have them.

“Promise me you’ll always remember that you’re braver than you believe, stronger than you seem, and smarter than you think.”  ~Christopher Robin

It’s that time of year again…….

2011-09-08T23:35:00.002-06:00

The third annual Mason Monster golf tournament is scheduled for Saturday October 8, 2011. This year it will be at Fox Hollow Golf Course in American Fork, Utah. Have questions, want to register, or donate items for the raffle ??? Please contact Cecil Read at cecil@caddiesbag.com or 801-318-8181

Thank you to Cecil and Melina for wanting to continue this annual fundraiser for Miracle Mason’s medical fund!!! Mason’s bills and medicine co pays continue to be very overwhelming. I still get large bills for Mason’s transplant in 2010 and probably will for the rest of my life. But, Mason is ALIVE and doing great….. So that’s what really matters!!! Every little bit put in Mason’s fund helps!!

It’s also that time of year……… that school starts. It’s hard to believe how fast the summer flew by, let alone how fast my kids are growing up. Each one of them is a unique piece of our family puzzle, and as they grow up they become even more unique and more important to our family as a whole! It’s sad and fun all at the same time to watch your children blossom before your eyes. All of them are such good helpers and have sacrificed a lot since Mason was born. I love them each so much!!!

Kaitlin and Ammon

Kaitlin on her 1st day of 7th grade at

Timberline middle school.

Ammon on his 1st day of school at

Quail Run Charter School.

Preston and Braiden

Preston on his 1st day of 5th grade

at Westfield Elementary.

Braiden on his 1st day of 3rd grade

at Westfield Elementary.

Needless to say I miss them being home to play and help with Mason since they are back at school now! But, at the same time, it is nice to have a little peace and quiet for nap times, a little time to get things done around the house, and non-interrupted therapy time for Mason. When Mason wakes up from his nap everyday now the first thing he asks is “Are the kids home?” Oh how he loves them!!!

And it’s that time of year………. for us to take that summer vacation that we never took! Because of Mason being so sick in June and then still being on and off of oxygen in July we didn’t feel comfortable taking him on a trip. August was a much better month for him so last week Mark and I decided to take the family on a much needed, late summer vacation missing a few days of school and work. The transplant team was fine with us taking Mason on a trip, because on Thursday morning at clinic his echo looked great and he’s had no symptoms of rejection. (An added bonus: his tricuspid valve is back down to moderate leakage, from being severe during his pneumonia in June.)

Last Thursday afternoon we packed up the car and headed to Cali. The drive is always long but, the reward of the beach at the end makes it all worth it. This was Mason’s first trip to Southern California (thus I hadn’t been since I was pregnant with Mason either) and he absolutely loved the beach. It was just one giant sand box to him!

Before Mason was born we used to take a trip down at least once a year to my old tromping grounds in San Clemente, Capo Beach, and Dana Point. Mason’s health until now had just been too delicate for such an adventure! It was like a breath of fresh air to finally play on the beach for a few days again.

Preston

Braiden

Braiden and Mason

Mason in his Stanford Golf hat

enjoying the "giant sand box".

Braiden, Mason, Ammon, and cousin Thompson
had a great time playing together.

Oh no!!! Cousin Thompson, Mason, and Ammon

were burried in the sand by Braiden and Pretson.

A lot of fun boogie boarding, surfing, skin boarding, and just playing in the waves was had by all! Several sandcastles were built and knocked down. Good visits with some special friends and family were enjoyed. Time was well spent under the California sun!!!

And then.......... to top off our fun get-a-way we were gifted money for tickets to experience the Magical Kingdom of Disneyland! What a wonderful way to end our vacation. We all had a blast! Mason didn’t want anything to do with the live characters though. (I was surprised he was scared of them, because they weren’t wearing scrubs!!) On the other hand Ammon was in heaven to meet and hug the characters!!!

Our family with Mickey

Mark and Ammon

It was an abnormally hot and humid

90 degree day at Disneyland!! We kept

pouring water over the boys' hair to

keep them cool and happy.

Mason was so exhausted from our days at the

beach that he finally fell asleep in the stroller

while our older kids continued to go on rides.

It was wonderful to spend time together as a family. I think all of us could have enjoyed a few more weeks at the beach, but reality called us home. The new date for Mason's biopsy and MRI is on September 29th. If you don't hear from me before then, just remember no news is good news! Also please call Cecil and register for Mason's golf tournament. Cecil does a great job planning it and everyone always has a great time.

Change of Plans

2011-08-25T11:35:00.058-06:00

I thought I should post for any of you who remembered from my last post that Mason was scheduled today for a cath/biopsy and coronary artery MRI today that plans changed. I came down with an awful stomach flu (fever, headache, vomiting etc...) on Tuesday afternoon. I hoped and prayed it was just a 12 -24 bug and that I could get over it by today so that I could still take Mason in for his procedure, but last night at 8 pm when I was still feeling crummy and hadn't kept anything down in over 30 hours I decided I better call Primary's and cancel! I'm sure they weren't happy with me that I canceled so late, because it messes up their schedules for the cath lab and MRI room. But, I was certain I was going to kick it in time to take Mason still. It is very difficult to get these two procedures scheduled back to back so I just hated to cancel!!!

I am feeling a little better today, but not well enough to have taken Mason in at 6am this morning and stayed at Primary's all day. Besides I certainly wouldn't want to spread this around!!! Then to top it off, Ammon woke up today with a fever so I kept him home from school. That would have caused a definite problem if I had not canceled Mason's appointment as well. I guess just when I think life is becoming a little more normal and predictable the unexpected happens!!

When I talked to Michelle from the transplant team last night she said they would work on getting Mason re-scheduled ASAP and if it doesn't get scheduled for next week then I will need to take Mason into Thursday's transplant clinic for a doctor visit and blood draw. He was supposed to have labs drawn today to check several things, but especially his Prograf level because it has been 3 weeks since his last blood draw to check his level. Mason seems to be doing fantastic, but without his Prograf level being high enough sometimes that mean old rejection can be sneaky and inconspicuous and show no signs ........ so I pray Mason's heart is doing well with no trouble from that rejection enemy! Also I was very much so looking forward to today's biopsy, good clean results, and then the final taper to get Mason off of his steroids. That being said I hope they can get us re-scheduled sooner than later!!

Please pray Mason does not get this awful flu that has done a number on me! Mom's are not supposed to get sick, but I can kick this better than an immune compromised transplant patient any day! And, Mason definitely would have trouble staying above water with this terrible bug!!!

Our kiddos all started school this week so I will post some cute 'first day of school' pictures soon. Mason certainly has missed having them home to play with, but he's also been busy with physical therapy and speech (that we are now getting through Intermountain Home Health Care through our insurance, and his new therapists are FABULOUS).

Kaitlin did survive her babysitting adventure back in New Hampshire and returned home safely! She at times watched 9 or 10 kids by herself and I was told she did an amazing job! I'm so proud of her. She also had A LOT of fun playing on the lake and learning to wake surf!!!

I'm off to nap with Mason and Ammon before the other kiddos come home from school, but I will post again soon.

Enjoy the Little Things

2011-08-08T07:08:00.006-06:00

I remember when I was pregnant with Preston (my second kiddo) ten years ago, I wondered and worried how with two kiddos (ha ha...... now I have 5!!! 2 was a piece of cake!!!) I would balance housework and playtime. A friend gave me a poem that I loved. I promised myself I would read it often and live by it, for I did not want to lose any precious time with my babies!

"THE CLEANING AND SCRUBBING WILL WAIT TILL TOMORROW,
FOR CHILDREN GROW UP, AS I'VE LEARNED TO MY SORROW.
SO QUIET DOWN, COBWEBS. DUST GO TO SLEEP.
I'M ROCKING MY BABY AND BABIES DON'T KEEP."

~Ruth Hulburt Hamilton

I'm sad to report that some where between my second pregnancy and my third pregnancy I tucked that poem away in a safe spot to eventually frame. But, did I ever frame it? No. Did I ever read again? No. Did I think about the main idea behind it once in awhile? yes, mostdefinitely! But, over all have I let keeping a clean house, doing laundry, and just keeping up with a crazy busy schedule with 5 kiddos get in the way with the most important thing in life -play TIME and cuddle TIME ? Sadly and unfortunately I say: too often, yes. I thought I was balancing life okay (not perfectly, but at least okay) most days, until I recently realized how grown up my first baby is! She is no longer a baby! She is almost a teenager! She will be in Jr High in 2 weeks! Where did the TIME go? ...........

This is my oldest child and only girl, Kaitlin.

She will be 13 in September.

Where did the time go???

It seems like just yesterday....

that she was only 2 weeks old!

And now she is the big sister

to four younger brothers!

Last Thursday Kaitlin and I

spent the afternoon together.

Just the two of us!

It was so nice.

We had lunch together and then

I sent her on an airplane

BY HERSELF

to New Hampshire.

Kaitlin was invited to Lake Winnipesaukee in New Hampshire to help babysit and lend extra hands when needed for two of her little cousins and a bunch of their cousins. We have a couple of extended family members who have summer homes right on the lake. Thank you to Aunt Tiffany and Uncle Preston for thinking of our Kaitlin. I know she will have a great time and hopefully she will offer the help you have wished for! It will most likely be her best 10 days of the whole summer!!!

Saying goodbye to Kaitlin as we hugged with tear drops running down our cheeks was the moment I truly realized how very grown up she is! This was the moment that began my questioning. Where has the time gone? Have I been a good Mother so far? Does she know how very much I love her (and my boys too on all of these questions)? Do I say I LOVE YOU enough? Do I hug enough? Do I compliment and find the good often enough? Have I taught her well enough to pray to her Father Above for comfort when she's scared or feels alone? Have I taught her well enough by word and example to choose the right? What could I do better from here forward? (What I do know is that my kids know how to do chores, because they constantly tell me that I'm the ONLY Mom that makes their kids do chore! )

Here's another poem I recently came across that answers just a few of the things I want to work on while I continue to raise my children. Thank goodness I still have time to better my mothering skills. At least all of my kiddos still have some growing up to do which gives me the room and time for improving

"If I had my child to raise all over again,

I’d finger paint more, and point fingers less.

I’d do less correcting and more connecting.

I’d take my eyes off my watch and watch with my eyes.

I would care to know less, and know to care more.

I’d take more hikes and fly more kites.

I’d stop playing serious, and seriously play.

I’d run through more fields and gaze at more stars.

I’d do more hugging, and less tugging.

I would be firm less often, and affirm much more.

I’d build self-esteem first, and the house later.

I’d teach less about the love of power, and more about the power of love."

AUTHOR UNKNOWN

What has Mason been up to???

Eating? not so much since his last hospital stay. Not sure why, except the docs say hospital stays in and of themselves can cause loss of appetite for a while after. And his reflux seems to have worsened lately too (thus yucky puking).
Sleeping? slightly better since we switched his steroids to once aday (and its a pretty low dose as well), but not great yet! But, I'll take 4 hours of sleep over 3! Thank goodness he will still nap, well as long as I nap with him! (spoiled? maybe! But I need the nap too!)
Walking? Not yet, BUT definetly getting stronger! We recently learned that prolonged use of prednisilone (Mason's steroid) can cause muscle weakness and discomfort. Not sure why that wasn't something I was informed about in all of my post transplant training at Stanford (or maybe I was but was so overwhelmed with all the new medicine information that I just don't remember).....but, it certainly makes a lot of sense now why sweet little Mason is not walking yet!!! He has been on steroids much much longer and at exceptionally higher doses than the average transplant patient because of his severe rejection in the beginning and his history of high antibodies. And the longer you are on steroids, the longer the weaning process! Mason hopefully will be completely off by the end of September. This will depend on the biopsy results of his upcoming cath on August 25. Although, in the last month as Mason has been on his much lower dose of steroids we have seen Mason's stregnth coming back by LEAPS and BOUNDS. He's climbing the stairs again and fast, cruising furniture, pulling to a stand with confidence and much less shakey legs, and riding his bike all over the place (he just pushes off the ground with his feet, doesn't pedal yet).
Talking? More and more everyday. Mason certainly talks more around our little family than he does around anyone else, but as he warms up to others he'll start to hold his own conversations with them too. He's in the stage that we really have to be careful about what we say cuz he'll copy almost anything he hears. One day recently after hearing 2 of his older brother's having a angry conversation like this, "shut up!", "no, you shut up", "just shut up", "no, you shut up"...... (which BTW, I dont like this word and don't allow it in my home, but I wasn't in the room at the time), Mason then gained a new favorite word! From the mouth of babes it sounds like this, "UT UP!!!" And now when Mason's mad or just wants a reaction from someone he continues to say that ugly (but, funny when he says it) word. I've tried to teach him "zip it!" instead, which from him sounds like this "IP IT!" and he will say this also, but he doesn't think it's quite as fun to say as "UT UP!" . The other thing he says all the time is "In a minute Mom!" This is ususally when I need to change his diaper, give him meds, do a g-tube feed, or I've told him it's time to come inside. At first I couldn't figure out where he learned it, but I soon realized I say that to him and my other kiddos ALL the time. ie: At night after I've put him in his bed, "I'll say i'm going to get my jammies on and I'll be right back", and after 30 seconds he begins asking, "Are you coming mom?" (which he will usually repeat every minute or two until I do come back and lay by him).......and guess what is usually my response? "In a minute." Hmmm? wonder where he learned that!
Needing O2's? No! Hooray! Mason is satting between 94-97% day and night on room air again. It is so nice to not have that constant noise of the oxygen concentrator in our home once again. It really had only been two weeks after his May hospital stay and then two weeks after his June hospital stay, so I'm not sure how we dealt with that noise for a whole year prior to going to Stanford for his new heart. I guess we just learned to tune it out and eventually just got used to it!
Blood pressure issues? Actually for the first time since transplant he is off ALL of his blood pressure meds (because his steroids made him very hypertensive). He was on three untill April, two until his hospital stay in June, and then in July about two weeks after coming home again his blood pressure began to be too low so the docs and I decided to take him completely off. Since transplant we (both of his transplant teams and I) really weren't sure if he'd ever be able to completely come off his hypertensive meds, so this has been very happy news!

Here are a few pictures from the last month:

Mason loves riding on her wheelchair

with his dear and darling cousin Madeline.

Mason's funny little personality is shining through

more and more all the time. He's contantly saying or

doing something to make us all laugh!

He loves to help water the flowers.

Especially, if it means he can get completely wet also.

(this is 6 days worth of Mason's meds)

Mason continues to take a lot

of meds, but I will not complain.

For, 18 daily doses of meds is

definetly better than the 40

doses he was on a year ago.

Mason has not been able to swim yet because

of his horrible pneumonia episode and the docs

would like him to be off his steroids. Pools are

serious germs growing petrie dishes!!! But, to

no avail Mason still finds a way to have fun when

we visit Uncle Reece and Aunt Michelle's pool.

I usually will stay out and sit on the side

with him. He will dress him self up with

goggles and swimming rings to make

everyone laugh. Then he'll throw them

all in the pool to see who will play his

game and return them to him first.

Somehow he still find a way to get splashed

and end up pretty wet by the end of our visit!

In the neighborhood Mason is very well loved!

Many of the neighbor kids will say to me,

"I'll keep an eye on Mason if you need to

run in the house!" In this picture big

brothers Braiden and Ammon, along

with two little friends Alexia and Izzy,

are pushing him all around in the

Grant boys' power wheel jeep,

because the battery wasn't working.

Look how much Mason has changed in a year.......

This was August 2010

.............and here's now!!!

Wow look what those steroids

will do to you!!! Not only has

he thinned out comng way down

on his steroids, but he's so much

HAPPIER!!

I've worked on this post for a few days now and it turned out to be rather long, sorry! Hopefully when the kiddos return to school I will be able to be a more consistent blogger again. Although I truly have thought a lot lately how impotant TIME is ! It is precious and priceless! I'm going to work on just enjoying the little things in life and the special time I have each day with my family. Those dust bunnies can wait!!!

I leave you with one last wish of the day:

I WISH YOU DANDELIONS AND MUD PUDDLES

"When I look at a patch of dandelions, I see a bunch of weeds that are going to take over my yard. My kids see flowers for Mom and blowing white fluff they can wish on.

When I feel the wind on my face, I brace myself against it. I feel it messing up my hair and pulling me back when I walk. My kids close their eyes, spread their arms and fly with it, until they fall to the ground laughing.

When I pray, I say “thee” and “thou” and “grant me this”, “give me that”. My kids say, “Hi God, thanks for my toys and my friends. Please keep the bad dreams away tonight. Sorry, I don’t want to go to Heaven yet. I would miss Mommy and Daddy.”

When I see a mud puddle, I step around it. I see muddy shoes and dirty carpets. My kids sit in it. They see dams to build, rivers to cross, and worms to play with.

I wonder if we are given kids to teach or to learn from? No wonder God loves the little children!! Enjoy the little things in life, for one day you may look back and realize they were big things."

~by Kelley Small, Publisher of Today’s Parent

May we all try more to "....become as a little child"! (see Matthew 18:3 & 3 Nephi 11:38)

Heart Buddies and Prayers

2011-07-13T09:07:00.009-06:00

Have I ever commented how amazingly special the "heart world" is? Before Mason was diagnosed at 3 days old I was completely oblivious that this world even existed. But, let me tell all of you how wonderfully supportive it is to be a part of this heart world. As "Heart Moms" we understand each other, we cry together, we laugh together, we learn from each other's experiences, we pray for each other, and we truly love each other. We love their heart kids like they are our own. Never does a day go by that in my personal prayers and our family prayers we don't pray for "Mason's Heart Buddies"!

During Mason's recent hospital stay we met some new heart buddies. Two of which are 12 years old, my Kaitlin's age. These 2 were very healthy one day, and the next day very sick and in need of a new heart. This is hard for me to fathom, even being part of this heart world. I just picture this happening to my own daughter! It's one thing to know from 3 days old (or for some since your pregnancy) that your baby will have a tough road ahead , but completely another thing to have a completely healthy pre-teen collapse and need CPR before your eyes!!! Okay both scenarios are hard and just make me want to shout........ "appreciate each day of life with your kids and loved ones like it could be your last!" You just never know what tomorrow brings!!!

Please pray for our heart buddies............

This is Abby.

She is a 12 year old soccer player from St George Utah.

She received a new heart YESTERDAY!

This is MiaBella.

She is a 12 year old soccer player from Salt Lake.

She received a new heart on June 5th.

This is Shakeara.

She is a 22 year old young wife from Preston Idaho.

She was born with a CHD and has had several surgeries.

She now is experiencing heart failure and liver problems.

Now this is our heart buddy Kaidence from the very beginning

of our heart journey. She has had vocal cord issues since her

heart transplant in December of 2007. She spent the night at

Primary's while we were there this last time after she had

another procedure done on her vocal cords. We were right

across the hall from each other. Her mommy and I had fun

catching up while Mason and Kaidence played together out on

the third floor patio. It was so wonderful to see them play together,

for 3 1/2 years ago they were two of the sickest babies in the PICU!

And how's Mason doing?

Mason has enjoyed being back home!

We spent the 4th of July at baseball games,

his most favorite way to spend time lately.

He was happy to see his little baseball game buddy

Kiersten.He had missed hanging out with her

while he was so sick and in the hospital!

Big brother Preston bought him a blue sucker at

another baseball game last week. Not the best color lips

for a heart kiddo! Especially his first day off of O2's

from his recent pneumonia! (Note to self: only

red suckers for Mason please!)

Mason did pretty well coming home from the hospital, except for completely mixing up his days and nights! By day 5 he was able to come off daytime O2's!! Woo hoo!!! But........ by night number 6 he began to have relapse. He coughed so hard all night that it caused him to throw up. He also had a low fever. He had hardly coughed since his discharge, so I was worried the pneumonia was coming back. Dr W, our pediatrician, checked him out for me that next day and sure enough...... his left lung sounded very junky. His left lung wasn't completely clear when we left the hospital, but definitely not this bad. Poor little guy and his left lung that just doesn't want to behave itself!!!

Mason is now on another round of oral antibiotics (Omnicef) which hopefully will do the trick and back on O2's day and night. I'm praying we don't have go back to the hospital for IV antibiotics. Mason has lost all of his steroid chubs now (I think from the strong IV diuretics he received while in the hospital and from coming down again on his steroid dose), but on top of that he has lost weight from his constant antibiotic induced diarreahs. I'm trying everything I can (by mouth and G-tube) to help put some weight on this skinny little kiddo but everything seems to go right through him right now. So please add to your prayers that Mason can gain some weight and get stronger. He needs to put some meat on his bones so he can walk!!!!

Thank you to all of Mason's fans and supporters. Thank you to all my "Heart Mommy" friends for your friendship and love. Thank you to all those who continue to pray for my Miracle Mason.

Home Once Again

2011-07-03T13:02:00.000-06:00

Good News........Mason was discharged yesterday evening! He is still on just a little bit of O2's day and night, only 1/8 -1/4 of a liter. Although I would love to have him back saturating great at room air, this is definitely much better than the day he was admitted 2 weeks ago when he was needing 2 liters! Probably another week of supplemental oxygen and he'll be good as new again. Or at least this is our Hope!

It is so good to be back home with our family and sleeping in our beds. Even ending up sleeping on the couch with Mason in the middle of the night is better any day than a hospital bed!!! After two weeks of hospital life I'm now asking myself how I did it so much longer at Stanford last year with out going completely crazy?! I guess for the love of our children sometimes we have to the undreamed of!

We are so grateful for the many prayers said for Mason during this awful sickness. I know without a doubt that each and every prayer and positive thought of faith and hope have been heard by Him, our Father Above, and have contributed to Mason's healing. We are grateful also for all the extra helping hands with house work, yard work, playing with my children, running our boys to baseball etc.... while I was with Mason at the hospital.

“pray one for another, that ye may be healed,”

James 5:16

Busy at the Hotel

2011-06-28T19:38:00.000-06:00

Mason's stay here at the hotel on the hill (in Salt lake City) this time has been a busy one. Everyday his breathing seems to get a little easier, but he is still needing a 1/4 to 1/2 liter day and night. The goal is to get him back to room air, at least during the day, before we go home. Although, that is not what is keeping Mason here. We are going to finish out his antibiotic course via IV, rather than switching to oral antibiotics to be discharged sooner. There is concern that last month when Mason was sick, switching to oral antibiotics may not have completely cleared up his respiratory bugs.............and then it just got worse!

One huge bummer that was discovered on Sunday is that Mason's port has gone bad! Mason has had his port since May of 2010 and the hope was to keep it a few years. They can last up to 5 years. We use Mason's port for blood draws almost weekly (as an out patient) and then when needed he can get IV meds through it. It has been so nice and convenient. I just put numbing cream over the port area an hour before it needs to be accessed and then there isn't any trauma in the poke. Unlike, without a port, it is very difficult to find a good vein in Mason and becomes a very traumatic ordeal!

On Saturday, Mason's port wouldn't draw back blood, but it would flush just fine. The nurse putTPA (a clot-dissolving agent) into his line and let it sit an hour. This is to dissolve any little blood fibers or clots blocking his line. We've had to do this a few times before. On Saturday, after this his port drew back like a charm, just like the other times when we've done this. But, then on Sunday it wouldn't draw back again for his morning labs. This has never happened so close together before so the docs sent us to x-ray to figure out the problem.

The radiologist infused contrast dye into his port line and we then saw the true cause of why it wouldn't draw back blood. The end of Mason's line should be in his IVC (a large blood vessel that brings blood from the lower parts of your body back to your heart), but instead it had dropped down and turned into his liver. I was truly sad to see this because I have loved his port. The transplant team reassured me that he should be okay without a port because he is now at a point post transplant where he shouldn't need as many blood draws and what he will need should only take a finger poke. Thus, on Friday while Mason is still an inpatient he will go to the OR to have his port removed.

Mason has been a pretty happy boy this hospital stay except for when it's bed time (not a surprise), the IV team comes to visit to place an IV or do a blood draw, or a respiratory therapist comes to suction secretions or do CPT (chest physical therapy). But, even when they do come and he's mad about it he always says, "thank you". It is the sweetest thing! And it's sad too, because in his mind what he's really saying is, "okay you are done! So, thank you and now get out of here!!!"

Mason has earned a few balls as his prizes for being so brave for his blood draws:

Here is one of his, "thank you, but now get out of here moments":

(Mason is not liking the chest percussions the physical

therapist is doing. This is to help promote lung expansion

& loosen up the junky secretions he still needs to clear out.)

And of course Mason's favorite past time at the hospital is going out for walks in the wagon:

Getting ready to head out on a wagon ride.

Mason's been so good about wearing his

O2's and his mask out on walks.

While Mason is an inpatient for the rest of the week the transplant also thought it would be a good time to switch up some of his meds while he's being monitored and has daily blood draws. The one major change is that Mason is now taking Prograf instead of Cyclosporine as one of his major anti-rejection meds. So we may no longer need to shave down our little teddy bear's back , shoulders, forehead etc..... because it was the Cyclosporine that mostly caused that. Steroids can cause that too but he is on a very low dose now that it probably won't. Cyclosporine can also cause swollen gums and Mason's were starting get pretty swollen. This should be a good change for Mason over all.

Mason's also down to just one blood pressure med which is just once a day. Before this hospital admission he was still on 2 BP meds, 1 of which was three times a day. But, with the sedatives he was on while he was on the vent he didn't need ant BP meds. So far since then he's only needed to add one BP med back in. Hopefully it will stay this way!

We feel so grateful to be surrounded by great doctors and nurses here at Primary's! So many of which have known Mason since he was a newborn, that a hospital stay is almost like a little reunion. Although it would to be nice to have reunion else where, it is so wonderful to hear them say "Oh he looks so good. He's getting so big". For, they knew him when he was very blue, sick, and weak! Writing this also makes me miss all our friends we met at Lucille Packard last year who also took amazing care of my Miracle Mason. We love all of you (at PCMC and LPCH) for all you've done and continue to do for our special little boy.

Much Happier

2011-06-25T13:25:00.004-06:00

Mason has made some great progress the last few days. Slowly his chest x-rays have gotten a little clearer each day. He still has a ways to go to get all of his junky secretions cleared out, but over all his lungs are much happier and he is feeling much better.

Yesterday (Friday) morning at rounds the docs decided to start weaning his ventilator settings. He did great all day as the vent gave him less and less support all day, so at 5:30 last night he was extubated (breathing tube taken out)! Oh how Mason is a much happier little boy now!!!

He is now on 1 liter of nasal cannula O2, which has been weaned from 2 liters at extubation. The plan is to continue weaning him down on the extra O2's now.

Mason also had an NJ (feeding tube placed through the nose that goes past the stomach and into the intestine) on Wednesday morning, so that he could continue getting calories and nutrition without the worry of vomiting with the breathing tube in and then aspirating. This morning that was taken out and he is slowly taking food by mouth and feeds through his g-tube button again. He is also much happier about this.

A few pictures:

Before yesterday...............

(Tuesday)

(Wednesday)

..........and after the extubation!!!

(Friday night)

A much happier Mason asking for some ice!

Mason's lavage sample (from his lung secretions) finally grew out a more specific micro-organism last night. He has enterobacter species in his lungs which hopefully now is getting killed off by his IV antibiotics. With this new information Mason was switched to Gentamicin, which is a more specific IV antibiotic used to treat the enterobacter bug.

Mason also will be moving from the CVICU some time today up to the third floor. This is always a great step to show us Mason is getting better and closer to returning home where he is happiest! I do not know how long he will need to be on the third floor, but baby steps forward is definitely great news! I hope in the future we can steer clear away from Mason getting sick with another lung infection like this. This was an awful one!!!

Thanks for your love, support, and prayers :)

Taking My Time

2011-06-22T22:01:00.003-06:00

Today has been a quiet day for Mason.

His chest x-ray showed no improvement this morning.......bummer.

This means that the breathing tube did not come out yet.

Mason seems to be saying, "I'm taking my own time"!

The ICU team changed the settings on the vent to give him a little more support and added a 2nd diuretic to see if this would help his sick little lungs clear out some more fluid and junk.

This afternoon they took another x-ray to see if the changes helped.........and they definitely did His lungs already looked quite a bit less cloudy.

Mason's fevers have also stopped today, so this usually means the antibiotics are doing their job.

Praying for a restful night and good news tomorrow.

Good Night

One step at a time...........

2011-06-21T20:15:00.003-06:00

I'll begin with the great news of the day.......... the biopsy came back a big fat beautiful ZERO!!! So, rejection has nothing to do with why Mason is sick. Which is a great relief!!! Now Mason will get to start the slow weaning process of getting him completely off his steroids. Off the steroids Mason will have more of an immune system to fight off these yucky bugs that keep getting him so sick. He will still be immune suppressed on his anti rejection meds, but not nearly as much as when steroids are added to that.

What does Mason have then? He definitely has an infection in his lungs. The samples of his secretions that were tested have so far shown that he is 2+ gram positive with micro-organisms (which could be a bacteria like strep or staff) and has 4+ (which is a lot) white blood cells covering his lungs -suggesting inflammation and infection. The lab will continue to watch the samples to see if they grow anything else and also if with more time they can identify a specific micro-organism.

Right now Mason is still intubated because the docs want to see him loose a little more fluid before they extubate. Today they started iv diuretics to help pull some fluid off the lungs and also 2 antibiotics (Vancomycin & Fortaz). The diuretics have definitely seemed to help today and I hoping by tomorrow we will notice the the antibiotics are also helping. Mason spiked a high fever last night and has continued to have fevers all day, but if the antibiotics are working-by tomorrow the fevers should stop.

It is so sad to see Mason like this. He is pretty sedated so that he isn't bothered by the breathing tube and also so he won't try to pull it out. He is getting some much needed rest but occasionally he wakes up and seems quite miserable. Some rubbing of his forehead, holding his hand, and snuggling up to his favorite blanket usually help calm and soothe him. The hardest moments for me are when he looks at me and tears begin to roll down his cheeks. With the tube in he can't talk or cry, but I'm sure he wants to do both!!!

Praying that tomorrow will bring Mason one more step closer to recovering from this yucky illness. Praying that tomorrow will bring some sunshine and a smile back to Mason's face!

The Good and the Bad

2011-06-20T20:34:00.004-06:00

The findings in the cath lab today were very reassuring that Mason's respiratory distress is not due to anything within his heart. The pressures were all within normal perimeters which also shows that Mason's right pulmonary veins are still nice and open! That was one of my major concerns. I am certainly relieved that there were no surprises in Mason's heart function.

Rejection? There was nothing really during Mason's cath that suggests rejection, but we won't know for sure until tomorrow when we get the results from his biopsy.

The surprise and bad news of the day is that Mason ended up in the CVIVU after his cath on the ventilator!!

When the anesthesiologist placed the breathing tube (which is a normal part of a cath lab sedation) he found that Mason's upper airway was super junky. Which is so strange because he sounded very clear prior to going to the cath lab, although he was working very hard to breath today. The anesthesiologist said he did not feel comfortable extubating him with all the congestion in his airways. He also said his lungs appeared to be very stiff, usually a sign of infection. Placing the breathing tube must have loosened up a hidden pocket of mucous, because for the last 3 hours in the CVICU the nurses have continued to suction out more and more junky secretions.

The plan was to keep him only intubated for a few hours tonight, but after seeing his chest x-ray the docs want to keep him on the vent through the whole night to give his body some rest. . Both of Mason's lungs are very cloudy :( So hopefully after a night on the vent and more suctioning by morning he will be able to lose the breathing tube. Mason is fighter, so I know he will get over this new speed bump sooner than later!!

Thanks for your continued prayers for Mason's strength and comfort

Mason is in the Cath Lab

2011-06-20T15:24:00.003-06:00

A few minutes ago I left Mason in the cath lab. I gave Mason a kiss and a hug as the anesthesiologist helped him drift off into sleep land. They will be taking extra pictures during the cath of his pulmonary veins, valves etc, along with getting numbers of the pressures in his heart, and then a sample of his right ventricle for the biopsy.

I will say I am very nervous today! We are going into this cath with the "unknown" ahead of us. I hope and pray what is going on does not have anything to do with Mason's right lung, for this is his only healthy and functioning lung. Please what ever it is........let it be treatable!!!!

A little while before we left Mason's room to go down to the cath lab I snuggled up with Mason on his bed, we folded our arms, and said a prayer together. I asked our Heavenly Father to please protect and comfort Mason during today's procedure and to please bless that our doctors may find out the information they need to help Mason feel and breathe better.

Thank you for your love and prayers.

Here We Are Again......

2011-06-19T12:42:00.004-06:00

.......at the Hotel on the Hill!

I'll back up..........

At Mason's transplant clinic visit on Thursday, nothing was determined really about why he still needs O2 (1/2 liter) at night, except that sometimes after pneumonia some kiddos need night-time O2's for 4 weeks and it had only been 3. His echo showed no changes to suggest rejection. His labs all looked normal (nothing showing infection) and his chest x-ray looked almost back to his base line. So, we discussed the need to see a sleep doctor and possibly an ENT. It is common for transplant kiddos to get enlarged tonsils from their medications, and some need to get them removed because of the tonsils causing sleep issues. I was told to make appointments with the doctors we discussed and just to watch Mason's sats and behavior. If anything worsened to call.

Well............ on Saturday things worsened so I called the transplant team. Usually once morning comes we can ditch the O2, but yesterday he still needed 1/2 a liter or he would drop into the 80's. (I have a Pulse Ox to check his sats.) Then when he laid down for a nap, (which he asked to lay down - NOT NORMAL!!!) he began to de-sat into the the 70's! Yikes! AND he needed 2 liters for the next 4 hours while he slept to stay in the 90's (4 hour naps would be a dream but NOT NORMAL either!) Upon waking I was slowly able to take his O2 back down to 1/2 liter, but not off. Worried? Concerned? Yes, just slightly! When I called the transplant team they were also quite concerned about his sudden increased need of O2. They sent us up to Primary's ER to have him checked out.

And here we are................

........checking into the ER.

Mason would have rather been at big brother's baseball

game (where we were supposed to be), but actually was

surprisingly pleasant and polite to all the nurses and docs.

I figured it was because I remembered to bring his

favorite baseball mitt and blanket :)

What is going on??? We still do not know! The doctors are baffled. His chest x-ray even looks better since Thursday.. His lab numbers all look normal. His CRP and white blood cell counts are both normal, which if elevated can be measures of infection in the body. So far his bacterial blood cultures and PRV (viral panel) have come back negative (but can always show something up to 72 hours). If this is not an infection, then could this be his heart? Could this be rejection?

They kept us overnight to watch his O2 sats. Also if we had gone home and he had needed more than 2 liters in his sleep then I'd be in trouble! Pediatric concentrators only go up to 2 liters, because a need greater than that means the child should be in the hospital!!! Fortunately he only needed 1 liter through the night last night, but has still needed 1/2 a liter today. Something is wrong! He hasn't needed O2's since his transplant. Well, actually since he overcame that first severe rejection.

Today they have done an echo but I have not spoken with a cardiologist since then to get the report. But, I will say that to me his tricuspid valve appeared to be severely leaking. I am not a pro, but have I have learned a few things about echo's in the last few years!! Mason's T valve began to leak mildly with that first severe rejection, and slowly with him having had so many biopsies, his T valve leakage began to be more within the moderate measures. But, it has been stable there for probably about the last 7 months. If it is severely leaking what does this mean???

The transplant team also said they want to move his biopsy up to tomorrow or Tuesday. (And this was before the echo even.) They are working with the cath lab to rearrange schedules and fit Mason in. This is to hopefully rule out rejection or get it treated for immediately.

I will update with any news as soon as I can.

HAPPY FATHER'S DAY TO MARK.

What a bummer of a day to be in the hospital!!!

We are sad we are not home spending this day as a family.

(This was at Braiden's Baptism on March 6, 2011.)

Please pray the doctors can find out what is going on with our Miracle Mason ASAP and get him treated!! Thank you!!

A Mother's Concern

2011-06-15T06:48:00.003-06:00

Do you ever get past a constant state of concern as a heart mommy???

For the last 3 1/2 years, so far my answer would be "no". With my other 4 children I was and am always concerned for their well being, happiness, health, good behavior, education - academic and spiritual, etc.... and also us as parents being a good example for them. But, with Mason it is all that plus the constant concern of looking for symptoms that something is not right with his heart (both his old half of heart that he was able to live with for 2 1/2 years, and now his new transplanted heart). The constant concern that I might wake up one day and find him not breathing. The constant concern that I may have drawn up his meds wrong (and there are still soooo many), where the slightest mistake could cause a huge problem. The constant concern that I'm not protecting him well enough from all the bad germs that come our way because of his immune suppresion. And with that being said, the constant concern and wonder, "is he living the most normal life possible for him?'

Presently my biggest concern is: that Mason is struggling getting over his pneumonia or could it really be that he is experiencing the beginning symptoms of rejection? Mason is still needing extra O2's at night (1/2 a liter) or he frequently drops to the low 80's without it, when he should be in the mid to high 90's. He also has been experiencing a higher resting and sleeping heart rate than his normal, an upset tummy, less energy, and occasional 'grunting' with his breaths. all of which could be rejection or pneumonia recovery along with just some 'bad days' with no true explanation. Ohhhh....... that constant concern and wonder of a 'Heart Mommy'!!!!

(Now it's 5:30 am on Thursday June 16, 2011)

Mason was supposed to have his biopsy and MRI today but it was pushed back about 1 1/2 weeks ago because of his pneumonia to June 30th. This is because of the risk of anesthesia after having a recent respiratory infection. He is also scheduled one week prior to that on June 23 for an echo and exam in transplant clinic. Although, because my concern I called yesterday to talk with Mason's transplant nurses to update them on how Mason has been doing. Due to all of his symptoms that I mentioned above they want to see him today in clinic. ( I forgot to mention that earlier in the week our pediatrician Dr W listened to Mason because of my concern of his continued lower O2 sats at night now, more than two weeks past his hospital discharge. The news was good and bad......his lungs sound much better in fact just about back to normal. It is great that his lungs have cleared up, but bad because it poses the question all the more- what is going on then???)

Hopefully today's appointment will bring some answers to my concerning questions!!! I'll update with any news. Please pray for the health and strength of Mason's heart and lungs :)

"Your father in heaven knows your name and knows your circumstance. He hears your prayers. He knows your hopes and dreams,including your fears and frustrations. He knows what you can become through faith in him." ~ Jeffrey R. Holland

HOME

2011-05-29T13:11:00.002-06:00

We made it home Friday afternoon!! Hooray!!

Mason is always well taken care of at Primary's, but being HOME is much better.

Mason certainly didn't waste any time getting his hands on big brothers' baseball helmet after getting home either.

He's always ready to play some ball!!!

Mason was pretty sick Friday night at home though. He spiked a high fever again, was feeling miserable, a needed extra O2's.

I almost thought I had brought him home from the hospital too soon.

Saturday he seemed a little better, but he for sure will need extra O2's while sleeping until he completely kicks this sickness.

Our wonderful pediatrician, Dr. W, made a house visit today to check on Mason. His left lung sounds junky! Dang! But that would explain why he's gotten worse.

So, when the blood work showed us that Mason had Rhino-virus the transplant team decided they'd like to still continue his antibiotics just in case he also had a secondary pneumonia infection going on as well. It's hard to tell with Mason from x-rays sometimes, because his left lung always looks a little hazy.

This is what I think. When Mason was switched from his 2 IV antibiotics (vancomycin and rocephin) to oral zythromax it just wasn't strong enough for what he also truly has in addition to the rhino-virus, pneumonia. And his pneumonia then started to show it's side effects. It was just too early to tell while we were there in the hospital.

Thank you to Dr. W who came by on a Sunday to check on my little Mason!!! He switched Mason to an antibiotic he should respond better to (omnicef) and hopefully it'll kick in soon and Mason will be ready to go watch some more baseball games.

The Rhino.......

2011-05-26T19:23:00.003-06:00

Sorry for no updates, but I've been waiting for something to show up from all of Mason's blood work as the cause for our visit to the "Hotel on the Hill".

First of all Mason is doing much much better than when we first came to the ER on Tuesday night.

Slowly yesterday Mason was weaned down on his oxygen until he got to 1/2 liter and then the docs left him on that for the night. Since later this morning he's been on room air, but when he fell asleep for a nap his O2 sats began to dip into the 80's. So the docs have said he'll probably need a little O2 while sleeping until he gets over this sickness.

They moved us to the 3rd floor this afternoon! A step towards coming home, yeah!!

Just this evening we heard what Mason has............ the Rhino-virus! I thought to myself, "you've got to be kidding me?!!" An ICU stay because of the everyday cold!! Shows what immune-suppression will do to a heart kiddo.

And........ as soon as we were told that's what he has, Mason started coughing and sneezing! No joke!!

I am glad it is nothing worse! We should go home soon!

Thanks for your love and prayers :)

The Unkown

2011-05-25T11:47:00.001-06:00

Yesterday morning Mason began his day acting rather fussy. I figured it was the same blood pressure issues he's been having, until I took his temperature. He had a temp of 101! I thought to myself that it was just a fluke and with one dose of Tylenol it would go away and everything would be fine. But, I wishfully thought wrong. His temp continued to go up slowly even on Tylenol and he acted like he was completely miserable. Although, he didn't act like or tell me that one certain thing was hurting him. Then as the day went on he started grunting with every breath.....which is usually NOT a good sign!

Long story made short........... after a trip in the evening to the ER at Primary's, Mason got admitted into the Cardiac ICU. The cause is still UNKNOWN, but Mason was under a lot of respiratory distress by then time I got him to the ER. He usually has O2 sats in the mid to high 90's and he was satting between 78-84 :( They got him on oxygen right away which made him quite mad!

His ears and throat look great, no urinary tract infection, no RSV, and his chest x ray looked about the same as his baseline ........but several blood tests are still pending. He is on high flow O2 at 6 liters of pressure and at 20- 40% oxygen and this has helped him feel a lot better. No more grunting! He also has been on two IV antibiotics since last night which may have been what helped his fevers to stop. No fevers today, yeah! I don't like the UNKNOWN so I hope we find out the cause of this soon. Maybe I jinxed myself the other day by posting that he was doing well!

I'll update soon.

I miss my kiddos at home!! Love you guys!!

Please pray Mason gets better soon and can go home off of oxygen support.

Journey to Holland

2011-05-22T07:12:00.003-06:00

Oh, it has been way too long since I last posted! I don't think I've ever gone this long without an update about Mason or our family. I think I'll blame it on lots of baseball games (Preston and Braiden are each on 2 different teams, yikes) and lots of end of the school year projects mixed in with all our doctors appointments.

I've read the follow story several times and love it! It describes so well the emotions of being on this journey we embarked upon when Mason was born into our family (and Ammon as well who came with his own set of special needs). I'm not sure why I've never quoted it on Mason's blog before, but here it is:

WELCOME TO HOLLAND
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this… When you’re going to have a baby, it’s like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” ” Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely hings …about Holland."

EVERY time I read this I cry! When most of as young women dreamed of having children someday we saw healthy happy children playing sports, meeting normal milestones, and fitting in well with all the other children in the neighborhood. But, I guess for some of us that would be 'Italy' and we didn't land there!!! We landed in 'Holland' where it is full of lovely blessings. but many tough trials as well. Seeing my Mason miserable in the hospital so many times and go through so much physically, or my Ammon not fit in well with the other kids his age in the neighborhood or school because of his intellectual delays........ wasn't anything I ever read about in my 'guide book'. It's much different than I ever imagined motherhood to be, not bad......just different. And it's true, I have met many wonderful people and learned a whole new language that other wise I wouldn't have if I'd landed in 'Italy'. I do love my unplanned journey even though it's not always easy. I pray each day for strength to endure it, and do all I need to along the way to be the best mother I can to our five children. I am grateful to know without a doubt that on days when I fall down, my Father Above helps pick me back up to continue forward on our journey through Holland.

What is Mason's latest journey?

For the most part he is doing well. We've had a few false alarms in the last month where Mason had several symptoms of rejections, but fortunately it turned out to be just that...false alarms. Some of his symptoms were very low blood pressure (60/30!!!), lethargic, vomiting, high heart rate, and just not acting like himself. What it turns out to be is he's not needing as many blood pressure meds anymore.

Mason's blood pressure is extremely sensitive to steroids. He has been on 3 different BP medssince his transplant. In January when he was admitted to the ICU and received super high doses of IV steroids because of lower heart function (which the docs had thought at the time was rejection, but ended up not to be) Mason had to go up on the doses of his BP meds. It takes about 3 months for the side effects of steroids to diminish from the body. So that being said, along with Mason's normal daily dose of steroids being slightly lowered at the end of March when we went to Stanford........ One night a few weeks ago Mason's body decided it didn't need to be on so many blood pressure meds and it was very scary.

He got really pale and clammy. I checked his blood pressure and it was 60/ 30 , and his normal is 100/60. He began vomiting and turned very lethargic, but had a very high heart rate (130). Luckily I have a fabulous pediatrician right up the street and wonderful transplant team atPrimary's with someone on call 24/7. They had me back off on his BP meds and watch him closely through the night, checking his O2 sats. As long as he tolerated the low BP (keeping his O2 sats in the 90's) I was to bring him into Cardiology clinic in the morning for blood tests and an ECHO, and if not....... a night in the ER it would be! Thank goodness he behaved and we didn't have to go into the ER. We have had plenty of those ER trips already!!!

It turned out that his ECHO was totally normal and showed no signs of rejection. A biopsy is the only sure way to check for rejection but too many biopsies can cause damage to thetricuspid valve. The docs held off on a biopsy believing that all of the symptoms Mason had were because of the blood pressure meds. What a relief!!! They decided Mason does need to be on lower doses of his BP meds from now on and hopefully will be able wean off of them once he's off all his steroids.

Although, since Mason has been on less BP meds we've had trouble finding the right balance.Some days his BP has gone too high causing him too feel absolutely miserable. And, too high off Blood pressure can cause awful things like seizures. Thus, we were up at Primary's again this last Thursday(May 19) to have another ECHO and discuss a plan to fix this BP issue. Thankfully again his echo looked normal, meaning that hopefully his feeling miserable is still just BP related and not rejection. We came up with a plan to wean him completely off of one of his 3 BP meds, ( the clonidine patch- because it seems that this one may be causing the imbalance of pressures) and then just go up slightly up on another one of them. I'm crossing my fingers and praying this works......... and so far so good since Thursday.

At age 3 1/2, Mason's top 10-.......

*sleeps with his baseball mitt

*loves to play to play catch with his ball and mitt

*talking more and more each day

*starting to eat better again (but still not enough to survive on solely) He ate well in January while on the large steroid doses... but back on his normal dose his eating tapered back down to almost nothing.....until just recently.

*loves riding his bike (not really pedaling though)in the house and outside

*will walk with help, holding on to our hands ( but still not by himself yet)

*made it through an ECHO without crying for the FIRST time ever

*interacting more with family and friends (He was so very shy when we returned from his transplant last July.)

*smiling and talking a little to the nurses and docs in the cardiology clinic finally

*favorite food is still BBQ potato chips

Mason has his next biopsy and a coronary artery MRI on June 16. Until then, hopefully no visits up to Primary's will be needed! Thank you for your conitued prayers and support for our Miracle Mason. We also have 3 special heart friends who have had recent surgeries and are in the hospital who are in need of some extra prayers at this time. If you have time visit these blogs: Carter, Grant, Hatcher. ( There may be more of our heart friends also out there in the hospital at this time that I haven't been a been able to check up on lately, but as a family we pray for "all of Mason's heart buddies" each and every night.)

"Life is a journey and there is no predicting what the out come may be. The only thing you can control are your choices.......... and they'll define who you are." ~Richard Castle~

Our Easter Miracle

2011-04-24T18:53:00.001-06:00

(I started this Sunday evening but never finished it. Sorry it's late.)

Happy Easter

Mason is truly our Easter Miracle!

Last year our family took a huge leap of faith.

We temporarily separated for an unknown amount

of time to live in different states so Mason could

be on the heart transplant waiting list. We knew

it could be at least 12 months that Mason would

await a good match. If he could make it that long

was always our worry. But after only 4 weeks of being

on the transplant list (and 6 weeks of Mason and I

being in California away from our family)..............

Mason received his new heart on Easter Sunday!

What a Miracle!!!

(This picture was just a few hours after his

transplant surgery with big brother Preston.)

And here is Mason this Easter!

Healthy and Happy!

Even though he still refuses to walk, nothing

stopped him from joining in on the Easter egg hunt!

His little 'bum scoot' gets him around just fine.

(At least that's what he thinks!)

This was last year while Mason was in the OR

receiving his new sparkly Easter heart.

It was so special to have the whole family

together that day as we prayed for our sweet Mason.

(They had come to visit for Spring Break)

And this year.....here we are celebrating Easter together at home!

Easter was an emotional day for me this year. It has always been a very special holiday as we remember our Savior Jesus Christ, His life, His example, His ultimate sacrifice, His atonement, and His resurrection. But, now it even has a more personal meaning for our family. I spent a lot of time thinking about Mason's donor family and the sacrifice they made for us. It is a perfect example of Christ like love and sacrifice. I truly pray they know how much they gave to our family on a day they lost their sweet little one. Ultimately it is unconditional love what they did for Mason and our family. They had no idea who would receive their child's heart (and probably other organs as well), but they donated anyways. It was true love and kindness that gave our Mason a second chance at life last Easter Sunday.

I will forever be grateful for Mason's donor family. I pray and hope that they too believe because of our Savior they will get to reunite again with their little one someday.

A beautiful Easter scripture to leave you with today:

‘And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.’” revelations 21:4

Happy Easter! Happy Spring!