Spring & Summer Flashback

I'm sorry it has taken me soooo long to get this post done, but I hope you enjoy it. It is full of pictures of Mason and our family from May through August of this year.

Spring always keeps us busy watching sports.....

(with a few camps and tournaments during the summer).

Lacrosse

Preston (11)

In the fall of 2011 Preston (11) switched from baseball to

Lacrosse and he has truly excelled in it! It is a fun

sport to watch and his team to second in the spring Gull

(Greater Utah Lacrosse League) 2012 Championship.

Baseball

Braiden (9)

(Braiden and cousin Peter)

Braiden (9) continues to play baseball. In fact he is very

passionate about it! He is an amazing catcher and 

pitcher. His team has a one a few tournaments!

He also gets to play with 2 of his cousins who are 

on his super league team with him, Ben and Peter.

,

(cousin Peter, cousin Ben, and Braiden)

 Let me just tell you, Mason absolutely loves

going to all of his big brother's games! He is

always their biggest and most loyal fan. 

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In June we spent a Friday night at the Hoggle Zoo

with the whole family and many of our heart friends.

Ammon (7) loved the zoo!

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In June the kids spent a week with all of their Strickland

cousins (41 in all). They played hard, canoed, swam,

rode a zip line, played volleyball, and much much more!

(cousin Nicole, cousin Brooke, cousin Chloe, and Kaitlin)

One night of the cousins camp all of the adults played 

"Amazing Race" with the kids! Mason and I were on the 

red team. We didn't win, but had a lot of fun!

Lots and lots of swimming

(Mason and cousin Joseph) 

Mason enjoyed finally being healthy enough

to play with all his cousins! He was definitely

one very tired boy after cousins camp was over.

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Our Southern California beach trip in July....

We enjoyed the beach for 6 straight days!

Mark and Mason

Mason

Ammon

Preston

Braiden

Best little buddies 

(that fight for Mommy's attention all day)

Ammon and Mason

Preston

Braiden

(cousin Coco, Kaitlin, Mason, me)

Ready for another day at the beach (Salt Creek)

Kaitlin

(Kaitlin & Mark)

I even got to catch up with two of my good friends

 from elementary school through high school,

Kim and Traci. It was so much fun to see them

and their darling families!

(Mark, me, Ammon, Mason, and Kaitlin)

 Mason

loved

the beach!

Good bye Cali! Thanks for the great time!

We will be back again next year.

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July 27 Mason was invited to participate as 1 of 7 children
representing Primary Children's Medical Center at the
annual fundraiser golf tournament put on by Smith's 
Marketplace. Mason and the other 6 kiddos got to play
in a little putting contest. Each child was accompanied by
a corporate employee of Smiths or Kroger Foods. 

What a great event it was to be a part of!

And to top it off, each of the 7 children won 

 their very own ipad3 just for participating!

Thank you Smiths Marketplace!!!

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In between all the summertime fun, Mason continued
to have frequents visits to Primary Children's for
cardiology/transplant clinics, back doctor check ups, 
and hematology visits for his monthly IVIg treatments .

Mason usually sleeps through at least part

of his several hour long IVIg infusions.

 He continues to receive IVIg for treatment to get rid of the Parvo Virus which invaded his little body last December. It was of killing off his red blood cells and the production of new ones. His last labs 10 days ago showed that his body is now making plenty of red blood cells and maintaining them (his hematocrit was 41.... amazingly high for Mason). But, the bad news is that the Parvo virus is STILL detected in Mason's blood. So hematology will up his IVIg dose and he will continue to get monthly treatments until the Parvo is no longer detected.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

At the end of every fun Summer Vacation there

comes "back to school"......which will be my next

family happenings catch up post. And hopefully

I'll get this next one done sooner than later! 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

*** MONDAY OCTOBER 8 MASON'S GOES IN FOR HIS FIRST EXTENSION SURGERY ON THE RODS IN HIS BACK. The doctor says it is a minor surgery and for normal healthy kids it is a same-day surgery, but for Mason it will always be an overnight stay in the hospital. I will plan for a multiple night stay, because we all know our Mason and his 'curve balls' or 'speed bumps', but we will HOPE for just one night stay. I will update sometime on Monday.

HUGS TO ALL AND HAPPY FALL!

Prayers for Matthew

Mason's sweet little buddy Matthew received a very 

special and miraculous gift two night ago.....

the gift of a new heart!

This is actually Matthew's second heart transplant,because his first heart was attacked by coronary artery disease. Two days ago Matthew received this 2nd donor heart after months of prayers on his behalf and just in time to save his life! Matthew was on the list for 239 days and in the hospital waiting for 164 of those days. Just 3 days before he received this special new heart he had a heart attack and became extremely ill. This is just another testament that prayers are answered and miracles do happen (and sometimes with not much time to spare)!! Our family has prayed day and night for Mason's buddy Matthew.....and we are so grateful to know him! Someday soon Mason and Matthew can actually have a play date OUTSIDE of the hospital!!

Please pray for Matthew as he recovers from his transplant surgery and that his body will accept this special new heart! And please pray for Matthew's donor family as they have thought to give life at a time of their great loss.

3 Years Ago Today......Don't Ever Give Up Hope

(Okay, I really started this on Monday Sept 3rd, but never finished because we had baseball games ALL day.)

Every year when we reach September 3rd I'm yet reminded of what a medical miracle our Miracle Mason really is! It was this day 3 years ago that we were given very little hope for our son's life. He was supposed to be listed for a much needed heart transplant, but was diagnosed during his cath with severe pulmonary vein stenosis this day.....thus we were told he was not eligible for a heart transplant. To read more detail about September 3, 2009's bad news go to this post and this post  . Today we celebrate that our cute, strong willed, amazing, happy little boy is still with us 3 years later when he was only given MONTHS to live that sad day in September of 2009! He has surpassed for sure all medical expectations! 

As most of you know he did receive a heart transplant 7 months later at Lucille Packard Children's Hospital at Stanford, but still only has one healthy functioning lung. Through a lot of research, love, hope, prayers, faith, tears, and endurance we found a way to give our Miracle Mason a second chance of life and a much better quality of life. Just look now at this stubborn, smiley, loving little almost 5 year old (I can't believe he's almost 5!) that doctors were about to give up on 3 years ago:

I say stubborn for a few reason's....He has always been very stubborn with a strong will to live, but he also has become a very picky stubborn little boy! Spoiled maybe?! If so, it's well deserved for all the pain he has endured! One example of his quirky stubbornness: These cute swim trunks he's wearing here are not so cute to our family anymore. He has wanted to wear them EVERYDAY this summer! They have holes on the bum (from all his scooting before he realized he COULD walk a month or so ago), and they are stained. He even wants to sleep in them, but I usually convince him that they need to be washed. Although believe me, he asks for them as soon as he wakes up! And, if I some how I talk him into (with bribery) putting a different outfit on for the day, within a couple hours he sneaks up to the laundry room, finds them, and puts them on. I've had to give up on him wearing a shirt that matches because only so much matches with these cute and awful swim trunks! He's one silly boy and I couldn't be more grateful for his stubbornness(most of the time)!!! 

We are never and will never be completely out of the woods with our Miracle Mason. He will always have the risk of rejection. He will always be immune suppressed. He will probably always be prone to get sick with pneumonia (in fact he had pneumonia again just a few weeks ago) because of the complete stenois to his left left lung. We will always be in the "unknown" with him being a heart transplant with only one functioning lung, because there are very few similar cases in the world and he is by far the youngest known case.....BUT he is still here with us on earth today and we cherish each and every day we have him here. He is healthy and doing well. He is happy. He is OUR MIRACLE. What more could one ask for??? We never go a day without being grateful for and thinking about Mason's donor family who gave us the gift of allowing Mason to live with us longer here on earth!

Through all that Mason's journey has taught us, I know one of the most important things I have learned and want to share with all of you, especially those of you facing a similar situation right now is DON'T EVER GIVE UP HOPE! Hope is what held me together 3 years ago when I felt like my world had shattered! Hope is what took me to my knees to depend on My Father Above. Hope is what increased my faith. Hope is what took us to Stanford. Hope is what got Mason his new heart! PLEASE DON'T EVER GIVE UP HOPE!!! To our little friends Matthew, Owen, and Kiley who are waiting for new hearts ( Matthew's second new heart), to our sweet friend Kaidence recovering from her very recent second heart transplant, and to all of our other heart friends out there I say to you (and your parents) HOLD ON, DON 'T GIVE UP, AND DON'T LOSE HOPE! 

"Heaven's kindness will never depart from you, regardless of what happens.

 Bad days come to an end, faith ALWAYS triumphs,

 and heavenly promises are ALWAYS kept."

~Jeffrey R. Holland

"If you are helpless, He is not. 
If you are lost, He is not. 
If you don't know what to do next, He knows. 
It would take a miracle, you say? 
Well, if it takes a miracle, why not?"

                                                         ~President Boyd K. Packer~

Thank you to all of you who continue to follow Mason's journey. We feel your love and continued support. I promise to post again soon. I still need to post pictures of the beach and other summertime fun. Soon! I promise! For now, have a happy day and don't ever give up HOPE!

Look Who's Walking!!!

Yes, it's actually Mason! 

He's finally walking.....

all by himself!

At age 4 years and 8 months 

Miracle Mason finally walks!

 Hooray!

"Optimism is the faith that leads to Achievement.

Nothing can be done without hope and confidence."

~Helen Keller

If anyone is a perfect example of optimism it is Mason!

He may take his time, BUT he doesn't give up!

Most heart kiddos walk much sooner than Mason,but he had many things going on that held him back. First of all, in the important early months and years of development he was in heart failure (from 15 to 28months old). His body was in complete survival mode at that time. Learning to walk was definitely not a priority! On top of that he had pulmonary vein

stenosis going on (and still does), so his body functions off of only one lung, thus he tires easier that the rest of us with 2 lungs! After his heart transplant I thought for sure he would walk soon, but little did I know he would be on steroids for 18 months and the longer you are on them the more they weaken your muscles.  He finally came off of the nasty steroids last October, but he had a lot of muscle strengthening to do before he could walk. Then his scoliosis continued to worsen which brought us to the point of surgery a few months ago, in April. With all of that behind him, better balance due to his back surgery, lots of practice, and building of his confidence.....Mason walks!!! As I've always said, "Mason is on his own agenda in life!" But, at least when he wants something he doesn't give up, even if it takes him a long time to get it!

A bit of more positive news.....

Mason has continued to receive blood transfusions and IVIg treatments almost monthly since December because of the Parvo virus and finally at his last appointment with hematology (Monday July 23) his lab worked showed that his body is finally making new red blood cells again and at a good rate! He will probably still continue the IVIg treatments for a few more months just to be sure that the Parvo is completely gone, but at least we've seen some progress.

We did make it to the beach a couple weeks ago and 

had a GREAT time. I will post more pictures soon. 

Thanks for checking in on us! Hope you are having an enjoyable summer!

Hope and Strength

Right now (7:30 a.m. July 6) I am at Primary Children's Medical Center waiting for my pager from the cath lab to go off telling me Mason's heart biopsy is complete. Did I forget to tell you Mason had a biopsy today? NO, because unfortunately this was not a scheduled biopsy! Yesterday we came to cardiology - transplant clinic for a routine check up which I expected to go very well because Mason has been doing great. So, I was surprised when Dr. E told me there was a significant and concerning change on Mason's echo. Concerning enough that she scheduled him for a biopsy first thing this morning! His echo showed that the walls of Mason's heart were much thicker than his normal base line and usually when this has happened before he has had some rejection going on. Dr. E is assuming if he is in rejection it will be mild (HOPEFULLY) because he has no other symptoms of rejection right now.


As I sit here waiting I pray that everything goes smoothly in the cath lab and that if Mason is in rejection it is MILD and can be treated quickly and easily. Please say a few extra prayers and think lots of positive thoughts for my Miracle Mason this day!!


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I've been meaning to post for a couple of weeks now. In fact I had thought out my entire post in my head while I was on a quite long run one day. To be more specific, this long run was June 23 while I ran the American Fork Canyon Half Marathon. It was my first run of this kind of distance since before Mason was born. His special heart and his life journey changed my life significantly. I have done a dozen half marathons and 3 full marathons in my past but with Mason joining our family those kinds of races (and the training required) were put on hold!  I continued to exercise for my sanity, but finding the time and strength to train for long distances was just not a possibility anymore (not with the kind of sleep Mason and I have always gotten!!).


In March I got the urge to run a half marathon again, but knew with Mason's back surgery coming up in April and an unknown amount of time in the hospital I probably shouldn't sign up and commit myself. After a good amount of time spent in the hospital with Mason during April and May ( 29 days as an inpatient.......meaning I was there too and not working out) I decided I still wanted to do it, but it was sold out! I thought, "probably for the best since my training had been pretty minimal". Although,  just for fun I tried to get the word out among our friends that if they knew anyone with a spot in the AF half marathon that wasn't going to run it after all that I would run in their place. Well, a couple friends pulled through for me so I could accomplish my goal (thanks Marnie and Boomer). I thought I was crazy but excited when a few days before the race I found out I was going to run it!

As I road the bus up the canyon at 4:30 a.m. that Saturday morning the butterflies in my stomach brought back many memories of my other races I had trained for and accomplished. It felt good to be doing something for me again! It had been a long time! Too long!


This half marathon turned out to be my favorite by far. Not because I had trained well and gotten a good night's rest (does 3 hours of sleep count???), because I certainly had not. It was my favorite because it was for a great cause, it was absolutely beautiful, I LOVED the quotes of motivation posted on big signs along the entire route, and because this time I finished a half marathon as the mom of Miracle Mason +4 more great kiddos


The theme of the race was "LIVE. SURVIVE. THRIVE. Support the fight against cancer". 100% of the race proceeds go to help people in our community pay for their cancer treatments. Even though I've been more personally affected by congenital heart disease, the trials that cancer brings to a family are so very similar (or any life threatening or changing disease for that matter) and it was so wonderful to see our community's amazing support of this fundraising event! While running I couldn't help but think how pertinent the theme was to Mason's heart disease and transplant journey. Mason's amazing fight to  still be here on earth definitely defines the theme LIVE SURVIVE THRIVE! While I ran I also named in my head all of our heart friends and those with other special needs (as well as their parents) who have fought so hard to LIVE SURVIVE & THRIVE! Thank you for your examples!!!


There were signs along the race path (I think about every 1/4 mile) that were messages dedicated to those who are fighting cancer, who have survived cancer, and who lost their lives battling cancer. Most were beautiful messages of HOPE and STRENGTH! I'm sure every runner received motivation from these signs as they began to feel tired and weary on their path to finish their goal. Even if you haven't been affected by cancer, heart disease, or another illness these messages of endurance can be related to any trial in life. 


One of my favorites was: "The task in front of you is NEVER greater than the strength within you!" This made me ponder back to the days when I had to decide to leave my family for an infinite amount of time to take Mason to Stanford and wait for a new heart. I realized with that experience I had a lot more strength within me than I could have ever fathomed! Although I was alone with Mason there I was never truly alone. I know my Father Above was there instilling in me the strength to do it and to move forward each day with our goal to save Mason's life. So please believe me, the task is NEVER greater than the  strength within you....... especially if you pray for help to increase your inner strength!


The quote that brought tears to my eyes and caused me to have to slow down and catch my breath was: "I'm running this for you Mom". It was after mile 9. I was feeling pretty fatigued and I had just finishing thinking to myself "why did I do this without training better?" And then came this sign! I read it and it was like I could here Mason's voice saying it to me. I began to cry! I thought, " NO Mason you've already run more marathons in the medical world than anyone in an entire lifetime should ever be expected to run. I'm running this one for YOU!!!" I was able to lose my fatigue by thinking of all that Mason has been through by enduring with HOPE and STRENGTH. I then thought, "I'm also running this for my family who has had to sacrifice so much, as they are also a big part of Mason's heart journey!"


I finished the 13.1 miles tired, but with a smile! I could still do it!!! It felt so good!!! And I had just been inspired by wonderful people and messages the entire way! I said to myself, "It's time to get outdoors and run more"! (Most of my running is on our basement treadmill. Just not the same as running outside in the fresh air!) I hope to do this half marathon again next year! I also hope Mason doesn't have anymore medical marathons or major surgeries for a very long time. He's inspired us enough already!

More importantly than a race, Mason and our family also had another great accomplishment recently. Mason is finally healthy enough to take to church, including primary (class time for the children). Last Sunday was his first time EVER in primary! He loved it. Of course I stayed with him....baby steps right?! But, he thoroughly enjoyed being with all the other children. And hopefully his biopsy will come out okay, because if he has to go back on steroids that will put a hold on going to church!

Mason also has enjoyed for the first time being able to truly spend time in the pool this summer. Still selective about what pools (no public pools of course.....thank goodness for neighbors and an aunt with a pool) and trying not to be splashed in the face or at least immerse his head (he's too pneumonia prone still) but he has loved it! He sits in his tube and kicks his way around the whole pool. All he wants to wear everyday all day is a swimsuit! 


So remember with much HOPE and STRENGTH you can accomplish many things!!!


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(5:30 p.m July 6) I just got a call from the transplant team and they had GOOD news!! Mason's biopsy was pretty clean! He just has some possible very slight nonspecific antibody mediated rejection. But, not enough to need to go back on steroids. Yay! Dr. E is just going up a little on his anti rejection meds (celcept and prograf) dosages. I can handle this!!!! So with this GOOD news we are off to spend next week in Southern California at the beach.......here we come sun and sand!

Overdue Pictures

Briefly I'll give a quick update on Mason and then I have some very over due pictures to share. Mason is finally feeling a lot better since surgery. He still complains of lower back pain but, only when laying on his back. About 10 days ago I stopped all the pain meds accept occasional Tylenol, because they caused him to vomit too much. My poor little guy was losing weight he can't afford to lose! The fluid that was cultured when Mason's bottom incision was re-opened due to possible infection still never grew any bacteria. Great news, but very weird that he had showed so many signs of infection. We have been very busy since being home with lacrosse games, baseball games, dance recitals, and end of the school year projects, but it's GREAT to be home.

Mason's 2nd Angle Heart Birthday- April 4, 2012:

We let off balloons into the sky with a note

in honor of Mason's heart donor and family.

These 3 were my helpers: Ammon, Mason, and Preston

(Dad and Braiden were at a baseball tournament and 

Kaitlin must have been at Young Women's)

I also made our 2nd annual mini heart cake, thinking

Mason might final want to take a bite........

but, he just held it and smiled.......

then he very carefully touched it, not wanting

to get any of that yummy frosting on his hands.......

And still NO bite! What kid doesn't like cake? Mason!!!

Preston's 11th Birthday- April 5, 2012

Preston is my easy, usually no need for birthday parties kid.

A night out to the movies, a new scooter, and lacrosse stick

and he's happy as could be!! I love those kind of birthdays!

Easter -April 8,2012

Coloring Easter Eggs....
(The rest of our kids hid from my camera as usual!)

Being together as a family on Easter is and always will be very
 special for us. For Easter Morning was when Miracle Mason
received his new heart, a new chance at life 2 years ago and 
our family was together that day at Stanford! 


That will always be our OUR EASTER MIRACLE!!!
  

Getting a decent family photo is almost impossible!

But at least we try!!! Too much Easter candy= silly pictures!

Mason was thrilled to get baseballs and a squirt

 gun for Easter! He gave all his candy away!! 

No wonder he can't gain weight!!

Braiden was such a sweet brother to help Mason

with our indoor Easter hunt before church.

We were lucky to have Sammi spend Easter with us.

She didn't make it home to visit her parents because

of school finals. She also stuck around to help out and

 play "mom" while Mason and I were in the hospital!

Thank you Sammi!

 We couldn't have done again without you!!

One very cute boy on Easter!!!

Mason enjoyed the outdoor Easter egg hunt we had
later on Easter afternoon with family.

Mason's VEPTR Scoliosis Surgery- April 11, 2012

Checking in for surgery

The BEFORE pictures

(This was as straight as Mason could sit!)

 And AFTER...... 

 What a difference!
 ( I just took these "after" pictures yesterday. The

incisions have finally healed up pretty good.)

Mason is our #1 super hero!

Daddy and our kids visiting Mason in the PICU the day after surgery.

Tonight on KSL, channel 5, from 7 to 10 pm is the Primary Children's telethon which is their biggest annual fundraiser. This year Primary Children's celebrates 90 years of taking care of and saving the lives of Children! ALSO, Mason and I are in (for about a whole 10 seconds) a music video made at Primary Children's while we were there last month that will air tonight throughout the telethon......so don't miss it!!! We appreciate more than words can express this hospital and all they do for Mason.

Home for Mother's Day!

Just a quick post to let you know we did make it home in time to spend Mother's Day together as a family! Hooray! Mason enjoyed playing on his play set with a few of his cousins on Mother's Day. (Thank goodness for pain meds...because his back is still very tender!)

(Sunday was quite a windy day......can you

tell from Mason's nice hair do?)

So far nothing has grown from the cultures taken when Mason's incision was reopened last week! I'm glad, because if something had grown then he would need IV antibiotics for at least 6 weeks! But weird, because we'd hoped that was the cause for the fevers and high infection markers in his blood work the last few weeks. Hopefully the fevers will just stay away and we just won't have to worry about it any more!

So far since Sunday, Mason has been fever free! Ya! Although, his back still seems to be tender and causing him pain. Poor little guy! And Wednesday we spent 6 hours up at Primary's because his incision was starting to look infected again, but his blood work showed no signs of infection......thank goodness! So the Orthopedic resident cleaned it up and re-steristripped it (Dr. Smith and his partners were all out of town at a conference) and we will take him back in to see Dr. Smith next week.

Thank you for you continued love, concern, and prayers. Soon I need to do a post with lots of pictures from the last 2 months. Springtime is just a very busy time at our house with baseball, lacrosse, and dance!!!

Return to the OR

Yesterday afternoon Mason went back to the OR to have his incision re-opened to look for any signs of infection (because of his fevers, continuing lower back pain, and consistent drainage from the lower incision).


Luckily Dr.Smith only had to open his lower incision. If he had found a lot of infection then he would have also needed to open the upper incision to clean out that area as well. (When the rods were placed last month there were two incisions made about 3 inches long each, one at the top of his back and one at the very bottom.)


There was a small amount of creamy colored fluid found near the right rod. They cleaned it and sent it for cultures. The whole procedure from being put to sleep to waking up only took about 45 minutes and everything went smoothly.


Mason had a very restless night and has a tender sore back today. He is such a good sport and such a brave little boy though!! Hopefully he will recover quickly, we will get some answers, and go home soon! Thanks for your continued prayers.

TAKE 3

It is said that the "third time is a charm" and today I certainly hope this is true! Yesterday, Mason was admitted to the hospital for the THIRD time in a month! That is a new record for Mason and his incredible journey. It's almost like a game of ping pong between Primary's and home right now, but a real game of ping pong would be much more fun! 

Why was Mason admitted again? Fevers!! Saturday night he had a fever of 101.5, Sunday day no fevers, but then Sunday night about midnight he spiked a fever of 102.5. With that fever on Sunday night into Monday morning the pain in his back seemed to increase horribly. Monday Morning he also was not able to come off of his night time oxygen (he's been on night time O2's for sleep apnea since November). He just needed 1/4 a liter of O2 to keep his sats up above 92, but still another sign that his body is not feeling well. 

After talking with the Transplant team on Sunday about the fever they told me to bring him in Monday morning to clinic. They said to have a low tolerance for fevers right now. So we were there by 9am. Mason's blood work showed an elevated white blood cell count and CRP level, which are both signs of infection in the body. This in and of itself was enough reason to admit Mason. He was feeling so crummy that I agreed this was the right thing to do. 

The good news is that yesterday's chest x-ray looked pretty good (meaning these are not pneumonia fevers) and his echo also looked great (so fevers would not be due to rejection). The question is then......is there really an infection in his back around the rods? Or did 

Mason coincidentally pickup a new bug that caused the new fevers? 

Today Mason's fevers are gone, without the use of antibiotics (no antibiotics were started in case the Orthopedic team decides they need to reopen to culture and clean out any infection around his rods because this could mask the infection) and he seems to feel much better.....so we all don't know what to think at this point! Except we all know Mason likes to throw curve balls. And Mason's blood work today shows elevated infection markers still.

Orthopedics is still not thinking there is an infection from the surgery because his incision doesn't look very bad, but we did go home to "watch and wait" for more fevers or any other signs of infection just as they said the plan was last week. Fevers came back, so here we are again! The general pediatric team, transplant team, and the infection disease team also continue to remind Ortho that being immune suppressed Mason's incision may not ever look too bad even if there is an infection going on inside. We are waiting on blood culture results still, but other than that Mason shows NO signs of the infection being anywhere else.

After talking with Mason's Ortho surgeon tonight the new plan is to take Mason into the OR on Thursday to open up his incision and look for infection. If tomorrow's blood work shows a drastic drop in his infection markers then we will re-evaluate if we want to do  something that invasive and aggressive about this possible infection.

For now, I need PATIENCE as we wait and decide if  this is what needs to be done. Mason needs COMFORT as each day's blood draw time comes and the trauma of trying to find an un-bruised vein to use. (Poor little guy has horrible vein access.) My family needs to know how very much I LOVE them as we are once again apart. 

"The lessons we learn from patience will cultivate our character, lift our lives, and heighten our happiness." ~Dieter F Uchtdorf

Home Again....Watching and Waiting

Yeah! We are home again!


There was never any final decision on if the fevers last Saturday were due to a lung infection or an infection on the incision (and possibly deeper around the rods) from Mason's spine surgery.


Mason's chest x-ray didn't look that bad. Well, his never looks normal anyways. The left lower lobe is always hazy from his pulmonary vein stenosis. But, on exam you can hear a little bit of crackles on that side right now. So he came home on an oral antibiotic more specific for lung infections (like pneumonia), in case that was the cause of the fevers.


As for the incision (and possibly internal) infection we are still unclear if there was/is an infection there. The main problem is that when the orthopedic resident came to check out his incision (while we were in the emergency room Saturday night) he cleaned up all the pus and put a new dressing on it. THEN the emergency room attending doc came in with her nurse to take a sample of the pus to send to the lab for cultures. Thus the sample sent to check for infection was not a good sample! The results were not positive for any infection, but possibly not accurate!


Saturday night Mason was put on 2 IV antibiotics and an IV anti-fungal to cover both lung and skin bacteria infections. Within 24 hours the incision started to look much better. When Orthopedics came to see it on Monday they said it would have looked much worse if there was actually an infection. But, Infectious Disease docs and the Transplant team did not completely agree.  Since Mason is on immuno-suppressants (his anti-rejection meds) his immune system may not respond the same as a normally healthy person. Even if there is an infection on his incision and deeper, his skin will not get super red and swollen like it would if his immune system wasn't suppressed. That being said, there was quite a disagreement between the docs! 


Monday night the general consensus was to take Mason off of the 2 IV antibiotics and the anti-fungal to see if the incision infection will re-manifest itself. So, WATCH and WAIT!! After no fevers and the incision still looking better by Tuesday night I told all the doctors that we can WATCH and WAIT at home. They really didn't expect anything to happen in 24 hours anyways after 48 hours of being on very strong IV antibiotics anyways. It could take 96 hours or more!


They agreed I can do the watching and waiting at home. Tuesday night we came home again! Hooray! Although, since they sent Mason home on antibiotics for the possible pneumonia this could keep the possible incision/spine infection at bay for at least the 10 days he's taking it. Just kind of complicated! But at least we are home! And so far, no more fevers!


The good news out of this hospital stay was that Mason came home OFF of OXYGEN! The Transplant team decided Mason needed to get another blood transfusion because his red blood cell count had remained too low since surgery. Even after he received a blood transfusion the night after surgery his count dropped again just a few days later. Therefore with a much higher red blood cell count his body's oxygen saturations are back up to normal. Hooray!


Thank you for your continued prayers and love for our little Miracle Mason.