Friday, May 28, 2010

Real Quick

Hi!! Just a real quick post to let you know we are still here and doing well!

We never got the antibody test results though. There was a mix up in the paperwork and all his other blood work got ran on Monday except the DSA's! They just figured that out this afternoon, so here we are back at the hospital on Friday night for a blood draw! Oh well! At least I can check my e-mail and make a quick post. (My laptop is still at the Apple repair shop!)

Please check back Sunday night for all the details on Mason's Celebration Night fundraiser. It will be June 23, 2010 in Highland Utah. Mark your calendars! Spread the word! Mason and I can't be there, but we will say "hi" over Skype!

Wednesday, May 26, 2010


I apologize for the lack of blog updates. I must say not having my laptop is driving me crazy! But at least the Hospital has a few computers with internet access , so that is how I’m posting this today. Mason just had his weekly echo and clinic visit with the transplant team and we’ve stayed after to use the internet!

Monday, Mason also had blood draws here at the hospital. The good news that afternoon was that Mason’s Cyclosporine levels are finally where they need to be. For awhile he was too low and then way too high. Hopefully he can keep his level stable now. Too low is not effective enough for anti-rejection, but too high causes his blood pressure to sky rocket! It’s a very fine line! This is one of t he main reasons he has blood draws 2x a week. They also check his electrolyte levels (mainly because of the diuretics Mason is on to counteract water retention from the steroids he takes) and his white and red blood cell counts (CBC).

To back up a little……I need to follow up about Saturday’s post about Biopsy 4’s results. I spoke with Dr. Bernstein later that night. He had good and bad news about Mason’s results. The good: the rejection cells were found in one small portion of his heart (rather than in April his 3r severe rejection was found in several areas of Mason’s heart!!) meaning it has not spread through out his heart. Thank goodness! The bad: The grading system for rejection has recently changed (I’m not sure how recent), but Stanford’s transplant team follows the same grading system they’ve always followed. That being said Mason’s “1r” (or 1b) they are calling a “2a” after reading the lab report . So even though the rejection is concentrated only in a small area, the cells that are being affected are experiencing “moderate rejection”!

As perfect as I know Mason’s Angel Heart is for him, and even though this whole ‘Transplant and Leap of Faith” chapter of our journey has miraculously fallen into place…….Mason’s little body still continues to prove to us how smart it is! He continues to make naughty antibodies that want to reject his heart! Enough already, okay?!!! I know with the necessary medical help along with all our prayers Mason will conquer this bump in the road!! We all know the usual routine of most sweet little heart kiddos; ONE STEP FORWARD TWO STEPS BACK . But, all these step forward up and over the bumps WILL get us home to our family.

The plan to bring down the rejection is much better than I would have assumed. Since Mason is doing well : no fevers, no vomiting, etc… and acting normal , Dr.B decided he didn’t need to be hospitalized for IV steroid treatments. Yeah!! Instead, I just had to up Mason’s oral doses (well, by g-tube) of his steroid (Prednisone) and thus treat him at home for the rejection. That’s definitely some sunshine among the rain clouds!!! The bummer: the higher the doses of Prednisone the crankier my little miracle guy is in the middle of the night. What’s new??

Today’s echo (and last week's) were excellent! His new heart is haealthy and has very good function. We love this kind of good news!! So even at a 2 rejection his heart continues to show us how strong it is!!!

On Monday during labs DSA's(donor specific antigens) were taken too to see if his antibody levels are rebounding back up, but we do not have the results yet. Unless they come back significantly higher requiring a new plan of action we are done this week w/ appointments. Next week we will have 3 days here at the hospital. Tuesday- Biopsy 5 &blood draws, Wednesday- clinic & echo, Thursday- Cytogam & IVIg infusions, blood draws. We will enjoy our 'time off' the rest of the week and takes lots of walks in the rain or sunshine. Either way is better than being in the hospital!!!

I will update again when I can. Just remember, usually no news is good news!! And I will post pictures of our nice weekend with Daddy and big brother as soon as I get my laptop back.

Saturday, May 22, 2010

"Just Okay" RESULTS!!!

Sorry I didn't post yesterday, but I didn't have the results from the
biopsy yet! Talk about anxiety!!! Then I was going to at least post
last night that I would get the results this afternoon for all of
Miracle Mason's loyal followers who
get almost as anxious as Miracle Mason's mom and had been waiting
for yesterday's post, BUT my laptop died!!!

I am attempting to post this from Mark's iPhone because I just dropped
off my laptop at the Apple store and they will have it for a WEEK!
What will I do without my life line?!!

Here's my JUST OKAY post:
I just received Mason's biopsy results. They are not awful but nor are
they the "0" we celebrated two weeks ago unfortunately. He is at a 1r
rejection! So 2 notches up from "0" (it goes 0 1a 1r 2a 2r...... With
4r being the worst) but at least it's not 3r like it was on April
16th! So, as I said the news is JUST OKAY. Not what I had hoped for!

At least Mason and I have Mark and Preston here who came and surprised
us for the weekend. They will help us find the sunshine.

I don't know the dr's plans yet. I will post again with their plans when I can.

Please pray with our family that this rejection will come back down asap.

Thursday, May 20, 2010

No Surprises

I love a day at the hospital with NO SURPRISES!

I love it when Mason makes it in and out of the cath lab with NO SURPRISES!

As I've said before, I really really love it when Mason is well behaved during his cath procedures!!

Mason was 'well behaved' and had a good uneventful day! Yay!

Today was a good, but long day at the hospital . After going into the cath lab almost 2 hours past our scheduled time we then went to the SSU(short stay unit) for 5 1/2 more hours for Mason's anti-rejection IV infusion treatment. Mason was not happy to be there, but was definitely happy to leave and return to out 'home away from home'. I was just happy to make it through our long day with out any unexpected events!

Mason's biopsy was not sent on the "fast track", because he doesn't seem to be showing any symptoms of rejection. Which is great and wonderful that he is doing well, but it makes me very anxious to have to wait longer (the normal 24 hour wait) for the results!!! I should get a call tomorrow afternoon.

We continue to PRAY and HOPE for Mason's body to accept his new angel heart and no longer try to reject it. His life has already been touched by so many miracles and I know he has many more miracles in store for him. I feel so very blessed to be Mason's mother and to witness his amazing STRENGTH and FAITH.

Quote of the Day:
(A friend e-mailed this to me this week.)

"There are two ways to live your life - one is as though nothing is a miracle, the other is as though everything is a miracle ~ Albert Einstein"

I will post hopefully tomorrow night w/ biopsy #4 results.

Wednesday, May 19, 2010

Biopsy 4 Tomorrow

I certainly don't have as much time to blog now that we are out of the hospital. But, Mason and I do try to fit in our daily walk (and or run) to see all the beautiful May flowers. When I'm not playing pharmacist or nurse that is!!! We've also been over at the hospital already Monday and today for blood draws. (These are to check his Cyclosporin level, CBC, and electrolyte levels). Plus, today was Mason's clinic visit with the Transplant team. Dr. Chin was very pleased with how well Mason appears to be doing.........although tomorrow will give us a better idea of how well he is really doing!

Mason has a 6:30 am check-in time for his Biopsy 4. He will also have an echo cardiogram following his biopsy. Oh how I hope and pray with all my heart that the results will come back with another "0" rejection!! Please keep a special prayer in your hearts tomorrow that Mason will be safe in the cath lab, that his biopsy results will show ZERO rejection, and that his heart function remains excellent.

Following his biopsy we will go to the short stay unit for a Citugam IV infusion. It is a 4-6 hour infusion which is very similar to IVIg. Mason has been getting them every two weeks since his transplant. Just one more way to keep his body from making the bad rejecting antibodies.

I will update tomorrow sometime!

Monday, May 17, 2010

Definitely Better

Our "Home Away From Home" is definitely better than being in the hospital!

BUT I will say it is not easier in some ways.........

In the hospital I get to be only "Mommy", but out of the hospital I am "Nurse" also:

**Getting all his (18) meds ready 2x a day(am & pm) and 3 of those also have a 3rd dose at mid day. Thank goodness for his G-tube right now which I can use for giving all his meds.

Except, Cyclosporine (instead of Prograff, which I know they use back home at Primary Children's) is the one med the doc's prefer by mouth, because some of it can bind to his g-tube extension, they find it hard to find the accurate dose. This level has to be monitored very closely through blood draws. Mason was doing okay with it by mouth for the last few weeks (We started doing it by mouth when he started taking a little food by mouth), but last week he started freaking out every time I would go to give it to him! Poor guy, it tastes AWFUL, even when being disguised by dipping the syringe in yummy syrup, so I don't blame him for freaking out! Then Friday night and Saturday morning at home he got so mad he threw up his other meds too.

**Taking Mason's blood pressure at least 2x a day. This is important because a few of Mason's anti-rejection meds can cause high blood pressure, so he takes bp meds but we still need to monitor it closely. And, our blood pressure machine is super sensitive and only will get the bp if he's very still and quiet. This means after 20 errors on last night's try I have resorted to doing it only when he's asleep! But Saturday morning I couldn't get the machine to read at all and since he had thrown up after all his meds including his 2 bp meds we had to return to the hospital to check his bp. Thankfully, his bp was fine so it was just a short visit.

But after all that, I made an "executive" decision to stop giving the cyclosporine by mouth, (only by G-tube from now on). It is not worth it! I don't want him to freak out each time, holding his breath and puking, nor to cause new taste aversions because of this nasty medicine! I want him to enjoy putting yummy things in his mouth.

**Counting Mason's Calories.......He needs to get at least 4 meals a day, every 4 hours, and then a 7 hour continuous G-tube feed at night. For his daytime meals I offer food first (right now he's still in his potato chip and Cheetos rut as being his favorites) and then I subtract how many calories I think he ate from the 150 cal's he needs per meal and give the rest of the calories by formula through his G-tube. This is similar to our feeding schedule before transplant, but I gave up on offering food first several months ago, and now the feeds also have to be timed right with all his new meds. Some are better with food and some without. This alone could be a full time 'dietitian's' job!!

It all seems quite crazy right now, but soon will become our new normal......just in time to return to Utah and add my other 4 kiddos back into my day!!! But all of this is DEFINITELY BETTER than being stuck in the hospital!!!

Mason and I had a nice visit with big sis Kaitlin, and my mom- Grandma SanDee over the weekend. The tough part was saying goodbye once again. As Kaitlin and I hugged, both of us crying, I thanked her for being so understanding and reminded her that we are on the HOME STRETCH now! We will all be back home together soon. (Too bad end of July isn't sooner than it really is though.)

A few of our faithful blog fans have asked for our mailing address:
Miracle Mason
1401 Edgewood Dr
Palo Alto, CA 94301

One of you asked his t-shirt size: probably a 3T to be safe. (All the steroids are chubbin him up)

And one last request for skymiles.....we've been able to fly 2 of my kiddos out here on donated skymiles, but I have 2 more who are also anxious to visit! If you have any skymiles to donate please just leave a comment with your e-mail so I can get in touch with you.

Most importantly.........A NIGHT OF CELEBRATION HONORING MIRACLE MASON will be on JUNE 23, 6-8:30PM, ALPINE UTAH. This will be a fundraiser night with a silent auction to help pay for our overwhelming amount of "out of pocket" bills for Mason's new heart. More details will be announced soon. A huge thank you to Paul Cardall who'll be performing that night, as well as a few other very special singers. MARK YOUR CALENDARS!

A few pictures from the last week:

Mason needs to wear a mask whenever we are in public.
Unless we are outside and people are at least 3 feet away.
He is VERY immune suppressed!

Taking a walk out on one of the Hospital's beautiful patios.

A happy reunion between mom and daughter!

Saying goodbye to 3 of our great nurses up on 3 West.
(Kim, Tracy, & Kristine)

Grandma, Kaitlin, Mom, & Mason on the Big Discharge Day.

Wow! I think we had literally moved in to the hospital.
Our stuff filled up the whole back of the Brand's Yukon.

Kaitlin made this out of rose petals in the back yard
as Mason's welcome home sign.

Having a little picnic in the back yard! Oh so happy!!

We went for a walk at the outdoors Stanford Shopping
Center. The flowers there are absolutely beautiful.

Mason was very happy to see some new scenery!

Saturday, we walked around a little bit of the Stanford
campus. In this picture we found a water fountain
just perfect for throwing "wishing coins" into.

It's getting late! I'm headed to bed and will update again in a few days.

Friday, May 14, 2010

The Big Day

It really did happen! Miracle Mason was DISCHARGED from the hospital this afternoon! It seems so surreal myself. Mason left the hospital with his healthy new ANGEL HEART! Wow!!!

We knew a few days ago that today would probably be THE BIG DAY, if his antibody levels came back low. But, I didn't dare announce that possibility! I was not going to set myself up for a 'jinx' and then a big let down! I know better.

After the antibody results, the main hold up was making sure I had all 18 of the correct medications (correct concentrations, correct dosages) to go home with. Because our insurance is out of network we could not fill them at the hospital, but somewhere across town. Then I had to ask the pharmacy manager if he would do me the favor of delivering them to the hospital (not something this Walgreens normally does), because before Mason could be discharged one of the Transplant Team's NP's had to check them all to make sure they were correct. What an ordeal!

So we loaded up two of the hospital's wagons with all our gear.....a very high tech blood pressure machine (I need to check Mason's BP twice a day because some of the anti-rejection meds can cause high blood pressure), a cooler full of meds, a case of Mason's G-tube formula, diapers and wipes that the sweet nurses usually toss in, CPR kit, my suitcase, and all the other STUFF we've acquired over the last 6 weeks........hugged the nurses goodbye......put Mason with his little mask on in his stroller..........and down to car we went.

When Mason saw the Brand's car (Sheila was kind enough to pick us up with all our stuff, Thank you) out in front of the hospital he took his mask off and was smiling sooooo big. We had been telling him we were going "bye, bye" but he didn't truly understand tell we got outside and to the car. It was precious to see his excitement.

At that moment I was too excited myself to tear up, but now as I retell it I have tears streaming down my face. Mason is a TRUE MIRACLE and has been watched over from Above, protected through all our ups and downs, and through every chapter of this journey. I am so very grateful to my Father Above, because of Him this BIG DAY was possible. And because of Mason many of us have prayed more fervently than ever before. Thank you Mason for teaching us so many important lessons.

Upon arriving to our "home away from home" as we pulled into the driveway Mason lifted his hands above his head and with a huge smile said for the first time ever "HOME". He had realized now that we had truly left the hospital! So special!! (only to return to the hospital next week 3x for different appointments, but I won't tell him that right now!!)

I will post pictures of the BIG DAY sometime this weekend.


Thursday, May 13, 2010


Today has been a happy day!

Mason is happy!

Mom is happy!

Dad is happy!

The doctors are happy!

The antibody test results brought happy news!

Mason's Level I antibodies are 0% and his Level II are fighting against just 1 donor specific antigen, and at a very low percentage (11%)

This means no extra anti-rejection treatments this week! Yay! We are happy!

This means discharge is very soon! Even more happy!

Mason and Mom had 2 special visitors arrive today.

Mason was so very happy and surprised to see big sis Kaitlin and Grandma SanDee whenthey arrived at the hospital this afternoon!

Thank you to a dear friend for her 'sky miles' which provided this happy visit!

Thank you to all of you for continuing to pray for Mason's happy and healthy recovery.

Wednesday, May 12, 2010

Still Here

Sorry for the lack of posts this week.

Usually, no news is good news!

Thank goodness that this is the case thus far this week.

I'd been waiting to get the results from Mason's DSA antibody tests from Monday night so I could post those, but still nothing has beck as of tonight! I guess the fact that Mason's transplant cardiologist didn't ask for the results to be on the fast track means they aren't as worried about Mason as they were 2 and 3 weeks ago. This is good! I'm just anxious!!

I also don't want to jinx myself, so I'm not going to announce Mason's estimated discharge date until it's said and done!! But it is soon! Not home to Utah of course but at least out of the hospital. We both have severe Hospital Cabin fever, as I'm sure you can imagine. Tomorrow will be 6 weeks from Mason being admitted to the hospital and the beginning of our very long sleepover!

Mason has been working with physical therapy to get some of his strength back and occupational therapy to get him eating by mouth again. We are seeing progress in both areas! Baby steps!!

Mason looks forward to getting in his stroller several times a day and going for walks. But, honestly how many laps can you really make around the third floor of the hospital w/ out going crazy?!! I'm ready for a real stroller RUN out in the sunshine!!! But if walking laps around the third floor cheers up my brave-heart little one, then that's what I'll continue to do for now!!

I will update with the DSA results hopefully tomorrow.

Please pray that Mason will not experience any more rejection so that he can continue to recover and we can return HOME to our family in Utah soon. (At least some time in July as planned!)

Sunday, May 9, 2010

For the Love of Motherhood

On this Mother's day I am very grateful to be "Mommy" to these 5 beautiful children:

(June 2009)

I have a poem I want to dedicate to my 5 kiddos who make it possible for me to be a Mother, my mom, Mark's mom, and all other mom's out there this day. Happy Mother's Day!

Before I was a Mom,
I never tripped over toys

or forgot words to a lullaby.

I didn't worry whether or not

my plants were poisonous.

I never thought about immunizations.

Before I was a Mom,
I had never been puked on.

Pooed on.

Chewed on.

Peed on.

I had complete control of my mind

and my thoughts.

I slept all night

Before I was a Mom,
I never held down a screaming child

so doctors could do tests.

Or give shots.

I never looked into teary eyes and cried.

I never got gloriously happy over a simple grin.

I never sat up late hours at night

watching a baby sleep

Before I was a Mom,
I never held a sleeping baby just because

I didn't want to put her down.

I never felt my heart break into a million pieces

when I couldn't stop the hurt.

I never knew that something so small

could affect my life so much.

I never knew that I could love someone so much.

I never knew I would love being a Mom

Before I was a Mom,
I didn't know the feeling of

having my heart outside my body..

I didn't know how special it could feel

to feed a hungry baby.

I didn't know that bond

between a mother and her child.

I didn't know that something so small

could make me feel so important and happy

Before I was a Mom,
I had never gotten up in the middle of the night
every 10 minutes to make sure all was okay.

I had never known the warmth,

the joy,

the love,

the heartache,

the wonderment

or the satisfaction of being a Mom.

I didn't know I was capable of feeling so much,

before I was a Mom

As moms may we always be overwhelmed by the Grace of God
rather than by the cares of life!!!

I hope all "Mommy"s around the world have had a nice day surrounded by love and kindness!

This morning my family at home made yummy
Mother's Day pancakes and sent me a picture!
Wish Mason and I had been there to celebrate
with them, but it's the thought that counts!!

But since this Mother's Day we are apart,
I found joy in the miracle that our Mason
really is! I found joy in every moment we've
had together this special day. And most of all
I found joy in Mason's many smiles today. He
is finally getting back to his happy little self, little
by little!!! Here's one of my Mother's Day Smiles:

Mason has been much more content since we moved up to the third floor Friday evening. He is doing great with his O2 sats, blood pressure, heart rate, and his energy is starting to pick back up again! He is testing bites of new foods everyday too, but potato chips are still his favorite right now (french fries are in 2nd place.........not too healthy?!! That's ok! At this point, we just want him to learn to eat by mouth again!)

Tomorrow Mason will receive a large dose IVIg infusion treatment. This is to try and train his plasma to quit making the bad rejecting antibodies! DSA and HLA antibody blood tests will be run before and after the treatment. So by Wednesday morning we will know more about our plan of action and a possible discharge date from the hospital, depending Mason's antibody %'s.

Again I want to say how grateful I am for Motherhood! And I am very grateful to Mark, Sammi, Grandma's, Aunts, and neighbors who are helping fulfill my duties back home! I couldn't do this without you!

I will leave you "momma"'s out there with one last quote:

And THANK YOU to Kailtin, Preston, Braiden, Ammon, and Mason for being the BEST kids in the WHOLE WORLD! I am proud to be your mom!

(October 2009)

Happy Mother's Day!!!!

Friday, May 7, 2010

Celebrating "0"

Today's post deserves a few celebration balloons!!!

The biopsy results came back from the lab late this afternoon and................. they are fabulous!

We are celebrating "0"rejection!

This is much better than we all expected. Even though clinically Mason looks great and has shown no more signs of rejection, because his rejection was so severe just 3 weeks ago we didn't expect a "0" already! What a blessing! Thus we all deserve to celebrate Miracle Mason and his amazingly strong Easter Angel Heart this night!!!!

Mason also finally made the official move to the third floor tonight. He seems much less agitated up here. Definitely not home, but one step closer.

Although Mason's biopsy came back at a "0", he still has some "bad guy" antibodies in his blood. So we will be in the hospital at least 1 more week doing IVIg treatments and possibly one other type of antibody treatment, Velcade. This is to try and prevent his antibodies from attacking his new heart again.

I am very grateful this day and always for: the prayers and faith of all of you, the "tender mercies of the Lord", and for all of Mason's doctors, surgeons, and nurses whom along with our faith make all these miracle possible.

Quote of the Day:

"....the Lord’s tender mercies do not occur randomly or merely by coincidence. Faithfulness, obedience, and humility invite tender mercies into our lives, and it is often the Lord’s timing that enables us to recognize and treasure these important blessings." ~David A Bednar~

ps. To read more about the sweet little angel I mentioned earlier in the week click here: Savannah's obituary. Please continue to remember this special family in your prayers.

Thursday, May 6, 2010

2 for 1

Mason had a busy morning. He had a 2 for 1! 2 procedures under 1 sedation.

First he went to the OR at 7 :30 am to have his port-a-cath placed. This took almost 2 hours by the time they found a good enough vein to use. This port will be very nice to have after we are discharged, because for the first 6 months Mason will have weekly (sometimes even 2x each week) blood draws and IV infusion anti-rejection treatments. So now he won't have to poked each time, nor will finding good vein access be an issue any more. This should last him at least a year.

After the OR he was taken straight to the CATH lab. He was very well behaved again with no unexpected "episodes"! That's what we like! His heart pressures and function are perfect! His Angel heart has absolutely amazed us all, including the doctors, because of how well it has handled his rejection. But at this time we have not received the results of today's biopsy (BIOPSY 3).

Thank you for your continued prayers and love for our sweet Miracle Mason to combat his rejection and have a healthy recovery. I will update tomorrow with biopsy results.

Wednesday, May 5, 2010

A few Smiles

Today I finally got a few smiles out of Mason! It made me so happy that his spirits were a little better today. He finally got some decent sleep last night with out being super groggy today. 3 nights ago the doctors tried him on Haldol (actually an anti psychotic med which also can help with sleep) but after 2 nights using that to help him sleep he was cranky, irritable, and very sleepy most of yesterday. So last night the Dr.'s tried him on a very low dose of Ambien.........and he slept sooooo much better and woke up happy.

He smiled and got very excited each time we mentioned 'going on a walk'. He also smiled and laughed when I played cars on the bed with him and a car would go flying right off the bed. He even gave a 'high five' to a couple of the Dr's today. He still cried inconsolably at times today, especially when new nurses or doctors come to see him, but at least he gave me a few of his darling smiles.

The ANTIBODY LEVEL (DSA) results came back last night. There has been a slight rebound in the bad antibody levels, but not significant enough to do any more plasma-pheresis at this time. Yay!!! A slight rebound was definitely expected, so we will do an IVIg treatment every 2 weeks for several months to keep those down.

Mason's cath/ Biopsy 3 is tomorrow at 7:30 am. The Cath Dr. will also get a good look at his coronary arteries at this time. This is protocol one month post transplant. (Yes! Yesterday May 4 was 1 month post heart transplant!) Prior to his cath Mason will go to the OR at 6:30 am where 'general surgery will place a meda-port either high on his chest or down lower on his belly. I pray they can get one placed, because we will need access for IV infusions and blood draws every week for a long time!


Here are a few pictures from the last few days, Enjoy:

Mason likes to help me update the blog and
check my e-mails. He types with his feet and hands!

Mason is getting all of his nutrition
through his g-tube still, but we are introducing
new foods everyday to get him interested in food again.
The noodles he just played in, but so far the last
couple of days he has eaten potato chips, dry captain
crunch cereal, and bites of carrot sticks. It's a start!

Mason was happily coloring today, until I pulled out the
camera, because then of course he'd rather have the camera
than his cool crayons. We had a special visit on Monday
from our little heart buddy Owen and his mom Andrea.
They gave Mason puzzle and some new fun twistable
crayons. (Thank you so much for coming to visit us !!!)

Is this some serious bed head or what? Mason's hair
has gotten really long! Just slightly in need of a
hair cut, you think?!!! His new healthy heart has
helped his hair and nails grow like never before!

I will post sometime tomorrow with results from the heart cath. Have a Happy Day

Monday, May 3, 2010

Another Sweet Angel

During our last month here at Lucille Packard I met a very special family. Sweet little Savannah is a 17 month old with heart and lung disease. Her parents, Mike and Denie have been so dedicated to their precious baby. They have lived here at hospital with her since January day in and day out. She had been listed for a heart-lung transplant since August, but as she got sicker recently she was put at a hold status for transplant. She was too sick to go through surgery. She fought a long and hard fight, but yesterday her body decided it was time to return to our Father in Heaven. Please pray for her family at this time as they mourn their loss.

It's days like yesterday that make me all the more appreciate every moment I have with Miracle Mason, as well as each one of my kiddos! We need to LIVE IN THE MOMENT and appreciate our loved ones while we have them here with us!!! I am also grateful to truly BELIEVE and KNOW that families can be together forever.

How is Mason?

Mason is doing well except for his "ICU psychosis or delirium" . He gets extremely agitated when anyone comes in his room right now, but at least last night he slept a total of 7 hours. Over the last several days the docs have tried different meds to help him settle down and sleep. Last night we finally found one that helped.

Last Friday Mason's white blood cell count was higher than normal so they drew cultures and started him IV antibiotics. Today the team got the results showing a bacterial infection in his IJ line (This is the large catheter line in his neck that was placed for the plasmapheresis treatments). The good news is that the infection was treated early on so it never caused Mason to be sick.

The IJ line was left in until a second DSA (antibody level test) was drawn to make sure there was not a significant rebound of his antibody levels that would require more plasmapheresis. This level was drawn today with results hopefully by tomorrow night. But, with the blood cultures showing an infection in this line the doctors decided not to wait any longer and had the line removed. Mason has to feel better with it out! It was a huge Iv catheter!

Then Mason will go for a CATH and BIOPSY 3 on Thursday morning. We hope and pray that his rejection does not rebound back up!! He will also have a port placed in his chest which can be used for blood draws and IV infusions. We will go home with this. The PICC line he got the week after transplant, which he was meant to go home with, quit working for blood draws in less than a week and was removed. Mason's poor veins have been used one too many times!!!

The plan now is too stay in the CVICU until Thursday. Then he will not have any lines in (right now he still has an ART line in his wrist being used for blood draws) and there shouldn't be any problem getting him an isolated room on 3 West. The concern last Friday was placing him in an isolated room but where a nurse could check on him very frequently because of his ART line. In the end they said he would need to be in their large room that has 4 patients and 2 nurses to be monitored well enough, but because he is a transplant he needs to be isolated. It's really just too confusing, but at least we will get up their before the weekend.

The nurses and I take Mason on several stroller walks a day to help cheer him up. We usually just take laps around the second floor and then out on a patio for a few minutes, but it definitely helps Mason's mood!! The nurses here are wonderful (almost as wonderful as Primary's !!!) and really try to help keep these hospitalized kiddos happy. They really have helped us feel very welcomed and loved while we've been here.

It's time to close my eyes and get some rest, because Mason just fell asleep! Yay! I'll update soon with anything new.

PS....Mason's Night of Celebration Fundraiser will be in June in Alpine Utah. I will post with details as soon as I get them.

Saturday, May 1, 2010

Happy 29 Months Miracle Mason!

Wow! Mason has had one very busy month! What a wonderful celebration this month has been with both tears of joy and tears of sadness. Mason is now a 29 month old with s new Angel heart and has overcome a very big rejection obstacle (although we know we will never be "out of the woods" for rejection episodes, but at least Mason and his new heart have proven they can fight through these obstacles!)

Here are a few pictures from April:

Spending the night in the CVICU the night after
his heart cath on April 1st.

Back in the hospital April 2 because of his mini-stroke.

Easter Morning, April 4th, pre-transplant bath

Out of the OR after his 6 hour heart transplant surgery.

Telling Mason Happy Easter as we celebrate his new angel heart.

Recovering so well the 1st week post-transplant

Mason prefers sitting in his stroller over the hospital crib.

Look at me I'm oxygen free!

Oh no! Mason's big rejection set back on April 16th.
It felt like starting all over again! Breathing tube,
chest tubes, central lines. We were so sad.

After 10 days of aggressively fighting the rejection we
celebrated good news w/ a walk and then some ice chips!

After a he had fun soaking the nurse and I during
his sponge bath he fell asleep for a short little nap.

One exhausted little boy! All he really has been
doing is taking a few little cat naps through out
the day and night, but not any good long sleep periods!

Yay! Mason has visitors for his 29 month b-day!
Dad and Braiden were all suited up because the doctor
was doing a sterile procedure, re-wiring Mason's ART line.

Mom and Braiden calming sweet little Mason.

I really started this post late last night (April 30th), but I never finished it.....sorry. Mason and I have been busy hanging out with Mark and Braiden the last couple of days. It was so good to have them here. We miss them and the rest of the crew very much. Braiden was able to make Mason smile and laugh many times while they were here. It was absolutely darling! Mason has not been his happy self, so I was extremely glad Braiden and Daddy could help cheer him up. It made me very sad saying goodbye tonight to them, sweet Braiden was very very tearful. It breaks my heart!

The nurses and I think Mason has a definite case of ICU/hospital delirium. He is just very irritated with still being in the hospital! But do you blame him?? He wines and cries a large majority of the time, so hopefully this next week will go smoothly and we can be discharged very soon.

The bummer of the weekend is that we are still in the CVICU! Not because Mason is not doing well, but because there has been a problem finding him an isolated room on the third floor in 3 West (because of being a transplant patient isolation is protocol due to being immune suppressed) ......we are still in the ICU. But at least they switched out the crib for a twin bed so I can lay with him now.

Have a happy weekend and I will update again soon!