Once Again.....

we are grateful for wonderful medical teams and hospital staff, the many many prayers said on Mason's and our family's behalf, and another GOOD NEWS DAY which made it possible for Mason's discharge yesterday evening!

After 10 days in the hospital, Mason's KUB (belly x-ray) showed that the pneumatosis was finally cleared up and we are back HOME. We are hoping that this will alleviate a lot of Mason's tummy aches and reflux issues. And hopefully.......... he'll slowly want to put food in his mouth again!

The GI team thinks that possibly Mason has a milk allergy which along with his high steroid use triggered him to come down with pneumatosis. A month ago the transplant team switched Mason's formula (which I use when I'm too short on time to make my own blended foods formula) from Compleat, which has no dairy in it, to Nutren Jr, which is dairy based. They did this because Mason's basic chemistry blood tests were showing numbers of poor kidney function. So they changed his BP meds and his formula to one with a lower % of protein to see if his numbers would look better. So after the changes, his chemistry #'s looked better meaning normal kidney function, but.......Mason hadn't ever been on that much dairy before! On the Nutren Jr he was puking, gagging, and filling his diapers with runny poops. I stopped using it after about 5 days and just stuck with my own blended nondairy formula with now a lower protein %. Even though I stopped using the Nutren Jr, the pneumatosis may have already begun forming in his belly :(

Now Mason is to stay off dairy completely for several months if not longer. Following this plan will hopefully keep the pneumatosis from putting Mason in the hospital again.

Yesterday Mason was given only clear liquids by mouth and g-tube. Today I will start giving him his blended formula. I pray his belly will tolerate it. Tomorrow I will take him back to Primary's for a blood draw, KUB, and a check up w/ Dr. E. I'm also praying that everything looks fine tomorrow w/ no rebounding tummy bubbles.

The docs have a few opinions about what may have caused his seizure like event last week. But, I've got to go get kids up for school. I will add that topic in w/ my next post.

Until next time........

For the Love of "The Hotel on the Hill".....

I apologize to those of you who have been checking back for a new update. Most likely with me no news is good news. Or at least no new bad news!

And that is the case now.....

we are still here at 'The Hotel on the Hill' with nothing new or nothing worsening. Mason's belly bubbles, known as pneumatosis, or slowly getting better. Those little bubbles are just taking their own sweet time to go away! The docs had told me it can be 14+ days to clear up completely, with the best case scenario being 7 days. I've just been hoping for the best! Do you blame me though???! We've spent enough time away from home this year! I am so grateful for his new happy healthy heart, but I'll admit.....this immuno-suppresion is tough. It WILL get better and easier!

Mason is on day 9 of being NPO (no food or drink by mouth or g-tube), but he is drinking a little water and chewing his favorite ice. He is still on TPN (IV nutrition)and IV antibiotics. The GI docs want to keep him NPO and on his IV's until all the pneumatosis is gone on his x-ray. Yesterday's x-ray was much much better, but not completely clear of the bubbles. Today Mason had a break from the x-rays and will get another one tomorrow. I'm hoping and praying for a totally clear x-ray tomorrow. Even though we do love the staff here at The Hotel, we do want to go home!!!

Mason also had his monthly IVIg infusion yesterday to get that done with while he's already an inpatient. It was scheduled for this Thursday.

All the above being said, you can see I'm not getting us out of here in time for my kiddos 1st day of school tomorrow. But w/ the help of Grandma I'm going to sneak away in a little while this afternoon so I can go to "Back to School Night" with my other kids and w/ the help of Daddy I may sneak away early in the morning to help send them off for their first day of school.

Thank you for your continued love, concern, and prayers.

A Sunnier Day

Today the sun shown through the clouds to brighten our day.

Mason is not very happy about still being in the hospital, so he is requiring all my undivided attention right now. That being said......this post will be very short. But, at least it is a GOOD NEWS post! A happy SUNNY post!

Mason's BIOPSY 8 yesterday came back with a fabulous score of ZERO!!! Hip hip hooray!!! This beautiful shiny ZERO means Mason gets to taper down just a little more on the nasty steroids.

Although we are so grateful for a great biopsy, we still don't have an answer as to why Mason had that scary episode on Wednesday. At least it wasn't caused by rejection, but we'd would love to know why it happened. I pray it never happens again! Little Mason needs a break! Don't you think?!!!

The pneumatosis is improving, but still present on Mason's KUB's (tummy x-rays). The GI team and the transplant team would like to keep him on IV antibiotics and TPN (nutrition) until it's gone. They are slowly allowing him to have water and ice again because that has been the hardest part for Mason of going with out food or drink all week. He's been a little happier tonight because he can have sips of water!!

I hope for a great weekend with much improvement in Mason's belly sickness so that we can get home by Monday or Tuesday. I really want to be home to get my kiddos ready for their first day of School, which is Wednesday. I can't believe I will have 4 kids in elementary school this year. 6th grade, 4th grade, 2nd grade, and kindergarten!! Are they really that old? Wow!

Thanks for all your special prayers this week, the meals, the house cleaners, the babysitting, and all the special messages of support.

A New Day

Today is a new day.

We pray this day is a much better day for sweet Mason.

Last night he did have the breathing tube taken out and has been doing fine on room air since.

Our nice nurse allowed me to stay in the CVICU over night and share Mason's bed with him. (He would have freaked out if she hadn't though!!!)

The docs are still unsure of the cause for yesterday's episode.

On rounds this morning the transplant team decided to send Mason to the cath lab for a biopsy (his routine one was scheduled for next Friday) because, with his pneumatosis coming on so suddenly, yesterday's seizure like event, and his hypertensive blood pressures he's been having this week, they're concerned that these are possible signs of rejection! Please NO!!

He is in the cath lab right now for BIOPSY 8.

PLEASE SAY MORE PRAYERS FOR MASON THIS DAY FOR NO REJECTION!!

We should have results late tonight.

Thank you to so many for your concern and prayers.

Prayers Please

Unfortunately Mason is in need of some very special and fervent prayers at this time. Today around noon he had a severe desaturation spell (his sats dropped to 58) and a seizure (or at least what appeared to be). I was holding him in my arms and must say it was very SCARY!

He was rushed to the CVICU and intubated because his airways seemed very restricted from this event or spell.

Within a couple hours he had a brain MRI. Thank goodness, the preliminary findings didn't show anything abnormal on his brain. We will get the full MRI report later this evening.

But, this does leave us baffled as to what actually happened today! What caused it? Will it happen again?

Some of the possible causes that could have triggered this seizure like spell are: high blood pressure (which he had at the time, but not excessively high), certain medications that he's on, aspirating, or certain infections. But as of right of right now we're not sure, and may never know unless it happens again.

I will say I am so glad we were in the hospital when this happened today and not at home!! Another one of the Lord's tender mercies.

The plan is to be extubated (taken off the vent) later this evening, be watched in the CVICU over night, and as long as he doesn't pull a naughty stunt on us again.... we'll go back up to the 3rd floor and continue to treat his pneumatosis (the reason why were admitted to the hospital on Monday) until it is cleared up and ready to go home.

As for the pneumatosis, it is looking better. At least some good "sunny" news came today. Yesterday's and today's stomach x-rays showed improvement. So, hopefully we will get home sooner than later.

Please pray Mason doesn't have anymore seizure like spells, that he can be extubated tonight and on his way to recovery,

Here is one of my favorite quotes that I needed to post once again, because I needed to hear it and see it today!!!

".....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--

Are you kidding me???

Today Mason had transplant clinic at Primary's. We headed up there at the crack of dawn with Mason's backpack full of meds and a bottle of my 'special recipe of blended up foods' for his morning g-tube feed. We were just expecting the normal lab draw, chest x-ray, echo, doctor exam, and then head home by mid day.........but, NO!!!

Mason's labs looked great, echo looked super, and the chest x-ray showed a lot of improvement in his left lower lobe pneumonia from two weeks ago. In fact it's almost all cleared up! But, on the chest x-ray the radiologist spotted an unexpected problem. The x-ray caught the upper part of Mason's bowel as well (kind of by accident) and there lay his newest problem or better known on our blog as his newest "speed bump". Mason has a rare condition called 'pneumatosis'.

What is 'pneumatosis'? It is gas pockets or bubbles in between the walls of the bowel. Yes, very strange!!! Sometimes it can be caused by infections such as rotavirus or c-diff and sometimes there's no infection involved at all. One group of people more susceptible to this condition are immuno-suppressed persons on prolonged use of steroids. That qualifies Mason for sure!

It can be dangerous if not taken care of because eventually the gases will continue to build up until they burst a whole in the bowel lining. Which for anyone that can be bad, because of the toxins which will escape through the whole infecting the blood stream. And with someone who is immuno-suppressed like Mason it would be extremely bad. His body would see the toxins and start making antibodies like crazy to fight them, which in turn would start to also fight the other foreign thing in his body...... his new heart!!!

After the transplant team told me about his pneumatosis I asked, "would this explain the completely sleepless nights we've had all weekend and why he didn't want me to give him any g-tube feeds?" Their answer was, "most likely. This pneumatosis can cause severe tummy pain". Poor little Mason. No wonder he pulled out the g-tube extension (along with his g-tube button as well) last night when I hooked him up for a feed. Yes, I really did have to insert a new g-tube button myself last night at home. I no longer take him to the ER for that. I can do it now with my unofficial honorary nursing degree (I've done it 3 times so far)! (Don't be jealous, it's not fun!)

So what does this mean?

Here we are back at the famous "Hotel on the Hill".

Are you kidding me?

Yes, it is true, just 2 short weeks from our last stay. Mason has been admitted for at least a 7 day stay. The docs took Mason off all food and drinks by mouth or g-tube to give his belly a rest. He will be on IV nutrition only, until his x-rays show that the pneumatosis is gone. Best case scenario will be 5-7 days. He has also been started on 2 IV antibiotics, Zocen and Flagil. in case there is a bowel infection which caused this. They will send off blood cultures as well as a stool sample to the lab to check for bacterial infections.

I am very glad Mason's chest x-ray caught this today before it got worse and caused horrible problems. But, I'm sad for him to be back in the hospital because it is definitely not his favorite place. I'm also sad because it is my other 4 kiddos' last week of summer vacation and here I am at Primary's w/ Mason. I want and need to be with Mason but I want and need to be with my other 4 wonderful children too. If I could just make two of me!!!

Please pray for the best case scenario that Mason will get better quickly and we can return home to our family. Thank you for your continued love and support,

Faith

I'll start today with a quick update on Mason. At his transplant clinic visit on Monday everything looked great!

I love love love hearing..."Mason's echo looks beautiful"! After so many months of dreading his echos because of the words... "I'm very sorry but Mason's heart is still in failure." And then even worse, the words that still make me cry to even think about, ... "there is nothing more we can do for Mason. Please just enjoy the time you have left with him"!

Never give up!!! Your special child will let you know when he's done fighting and ready to go Home. But until then, fight with them all the way!

Mason will never be 'out of the woods' for possible rejection. He will always live his life with congenital heart disease and on nasty anti-rejection medications. But, he has a gifted healthy heart now that has given him a new chance at achieving his earthly mission. I thank daily in prayer Mason's selfless donor families and all of the amazing doctors and nurses that have made this a reality in our lives. Dreams can become reality! Miracles do happen!

For now, Mason still struggles with keeping his Cyclosporine level within the correct range (which is why he still has at least 2 blood draws a week). He is also not wanting to eat much at all by mouth, except for water which he loves . Yesterday he ate 2 potato chips which called for a celebration! All his meds seem to be bringing back his severe reflux that he had during heart failure. He gags all the time even on reflux medication! Poor little guy. Thank goodness for his g-tube so he doesn't starve or dehydrate!

Mason also had 48 hours of pukes and diareahs this week :( but, he seems to have kicked it now and is feeling much better.

But, the good news is..... he is down from 38 doses of meds each day to 32 doses. Baby steps to a a happier tummy.

Now, the reason for the title of today's post. Mason's journey has required a lot of FAITH the entire way. Even when it has felt like the sky was falling and the ground crumbling beneath my feet....faith would give me the strength to carry on.

Two days ago I felt my world begin to crumble again. requiring me to muster up enough FAITH to say to myself, "It will be okay. I can handle this." But can I really? I received the phone call we knew would come but had hoped wouldn't....... our health insurance called to tell us that Mason has met his life time max and is no longer covered!!! Yikes! Very scary!

So as of right now we are stuck with a $107,ooo bill from just his day of transplant because of certain things our insurance wouldn't cover, plus $1000's more of bills since then that they wouldn't cover. And now that Mason met his life time max of $2.5 million (which I thought was a max of 2.2 million)..... there's no use to continuing fighting those unpaid bills. They won't touch them!

And, do I dare mention his care from here forward and all of his expensive medications??? Frustrating!! Is it really possible this is happening?!

I'm reapplying for medicaid and social security. Praying they accept Mason this time!

(And thank you to those who e-mailed me advice on applying for financial help back around the time of Mason's fundraiser. I'm presently looking into everything!!) I do have my homework set out for me now.

These words have given me the strength to attempt getting over this very large speed bump:

"I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise!"

This is from the song "What Faith Can Do" by: Kutless. I first saw these words on Paul Cardall's blog a few months ago and then my friend Corrine sang this song at Mason's Fundraiser. The words are absolutely beautiful and very very appropriate for Miracle Mason's journey. I will take strength and inspiration from these words, pray to my Father Above for guidance and help, and I will get medical coverage for Mason!!

Here's the rest of the words to the song:

Everybody falls sometimes

Gotta find the strength to rise

From the ashes and make a new beginning

Anyone can feel the ache

You think its more than you can take
But you are stronger, stronger than you know
Don't you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do

It doesn't matter what you've heard
Impossible is not a word
It's just a reason for someone not to try
Everybody's scared to death
When they decide to take that step
Out on the water
It'll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do

Overcome the odds
You don't have a chance
(That's what faith can do)
When the world says you can't
It'll tell you that you can!

I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise!

32 Months Pictures

I'm a little late this time, but Mason deserves three cheers for his 32 month birthday which was on July 30th! (I did start this on Aug 6th, but Mason's Aunt Bridgette got married over the weekend so we were very busy and I never found time to finish. Congratulations to Bridgette and Hyrum!!!)

Mason would rather take the camera from me

than have his picture taken! Happy Happy 32 months

Miracle Mason! Another month older, another great

milestone accomplished! Hooray for you, my Little Buddy!

July was a busy month for Mason:

Mason made Ronald Mcdonald House his new home for

a few weeks. Mason was very confused on what to call

home anymore, but, at least they had one of his favorite cars

there just like the Brands (where we stayed March through June)

had at their house. Everyday he'd asked to go outside to ride this

car. And, he always knew he had to help me clean it first with

Lysol wipes before he got in. Once he got in he never wanted to get out!

Hiding from the camera on the 4th of July.

Mason and Mom had a few overnighters in the hospital for fevers

and pneumonia. (at Lucille Packard and then later at Primary's too)

Mason and Mom flew home to Utah to reunite with their family

after 5 months! In this picture are 3 of Mason's 4 siblings:

right to left- Braiden, Preston, Kaitlin

Picture taken at the airport for our homecoming.

Mason is back in his old favorite spot on our back deck.

Gotta love those cute chubby steroid cheeks!!!

Our sweet neighbors the Grants gave this car to Mason our

first weekend home, just like the ones he loved in Palo Alto!

Thank you!

Mason can get himself in and out of his car by himself

and he can make the car go backward, but hasn't quite

figured out how to go forwards yet. Mason is still not walking

but, I know he has the strength now. When I try to practice

with him he begins to cry. I think it's just fear of the unknown!

Playing with big sis' sunglasses and reading books at the bar.

Loves putting glasses on, even if they're upside down!

It's that look again, "enough picture already Mom"!

Mason continues to keep me very busy with:

1x weekly clinic visit,

2x weekly blood draws,

daily pharmacy duty

(it takes me about 45-60 min a day to prepare his meds),

remembering to refill meds before they run out,

blending up foods for his g-tube feeds,

napping duty

(a must, because neither of us seem to get much sleep at night),

2x daily (or more sometimes) blood pressure check,

..............and then find the time to care for the rest of the family!

My days aren't long enough!!!

I will update again soon. Have a great week!

On the Mend

Mason was discharged yesterday!

Yay!

We are both very happy to be back home!

The IV antibiotics seemed to do the trick to start the mending process.

WBC and CRP levels are both back within normal ranges.

Mason came home on an oral antibiotic to finish the course.

Just in case the infection from 3 weeks ago (at Stanford) made a reappearance the docs prescribed an antibiotic he's never been on before (in hopes to kill any resistant bugs or in case Mason is immune to the more common antibiotics.)

Bugs and germs please stay away from our Mason!!!

We don't want anymore get-a-ways to the Hotel on the Hill anytime soon!

Thanks for your prayers and love :)

ps....I'm late on Mason's 32 month post (July 30th was the day). Hopefully I'll get to it in the next couple of days.

A Visit to the Hotel on the Hill

For those who are new this year to Mason's blog, "The Hotel on the Hill" has always been my code name for Primary Children's Medical Center during times when Mason has been admitted as an inpatient.

That being said, you may guess that our weekend didn't turn out as expected! When we should have been celebrating his ZERO rejection Mason came down with a high nasty fever and felt crummy. Friday I just thought it was from Thursday's IVIG which would have been a normal reaction for one day after. But, Saturday night it was still high (at one point 103.5). After talking with the transplant team and a visit with our pediatrician Dr. W, we knew it must be a new infection he'd come down with! Those darn immuno-suppressants!!!

So, here we are staying at the Hotel on the Hill! Sunday morning I brought Mason up here to the ER to have labs drawn. Especially since his ears and throat looked fine when examined by Dr. W the next step was to do blood cultures, a viral test, CBC, CRP, and a chest x-ray to figure out what was causing the fever. After 7 hours in the ER Mason was admitted to the 3rd floor due to a high WBC (white blood cell count), a high CRP (which measures infection and inflammation in the body), and haziness on his left lung with suspicions of possible pneumonia again (or just never completely cleared up from last month!)

Mason was started on 2 IV antibiotics and will need them at least through Tuesday afternoon. They are using different ones than he was on last month in case this is a recurrence of the same pneumonia infection. His fevers have stopped and his WBC and CRP have already dropped today! So I think we caught his infection in time before it made him too sick.

As much as we love the doctors and nurses here at Primary's we hope to check out of the hotel. tomorrow. As long as his WBC and CRP continue to drop back towards their normal ranges we will be able to switch to oral antibiotics tomorrow and head home. Mason is just not a happy camper in the hospital even if I tell him it's really just the Hotel on the Hill!

This immune suppression thing is very hard!! As much as I try to keep him germ free somehow germs sneak there way into his little body. Both of our transplant teams say the first year is always the hardest. And then we have the extra worry because of Mason's left lung. Because of his PVS (pulmonary vein stenosis) causing very little blood and O2 flow through that lung he has a higher chance of getting infections there. Please pray with us that especially during this tough time of having basically no immune system that Mason can stay healthy and out of the hospital. We don't want rejection or any more infections!!!