Friday, October 30, 2009

Celebrating 23 months With Our Hero Mason!

Mason is truly our (super) hero)!
What a great accomplishment for a little guy who's been
through so much! Happy 23 Months Miracle Mason!!!

Since the kids dressed up for school today, Halloween falling
on Saturday (tomorrow), Mason needed to be dressed special too.
I thought a cape with his Superman t-shirt would be very
appropriate on his 23 month b-day. For after all, he certainly
is quite the he keeps on fighting to be strong,
even with half a heart!! And you can really tell he's almost 2,
because he will not sit still for a picture.

Mason LOVES the outdoors! Too bad it is already getting
so cold here in Utah. I love this picture of my little Miracle Superhero.
He is just as happy as could be to sit and watch what's going on
outside. The funny thing is, all the kids were at school
but there were guys out mowing the neighbor's yard, which
was just enough to keep him content and hold his attention.

Oh how Mason loves bath or shower time!
Here are two sweet boys, Mason and Ammon.

He scooted down the stairs and now he's trying to
figure out how to come back up.

Always so happy!

This is at one of Preston's football games. We love when
things are outside so Mason can join in on the fun. We still
stay away from indoor crowds, Mason can't handle the germs. (And I
really only have 5 kids, Kaitlin's friend Chesney had joined us that day.)

And after a long hard day Mason will at least sleep a few hours!
I love pictures of my sleeping babies.

Mason seems to be doing so well. Beside the occasional pukes (at least once a day) from his heart failure, he acts like he feels pretty good and his energy level is better than even just a couple of months ago. His newest tricks are : getting up on one knee and then trying to pull himself up to a stand at furniture (still can't do it completely by himself, but at least he tries),
and he loves dancing to Kaitlin's music. He will scoot on his bum, spinning himself in a circle and wave his arms up and down to the music...... and the whole time watching with a smile to make sure we are all looking at him. He's quite the "show off"!

When our busy day comes to an end and I've tucked all the other kiddos into bed, I rock my little Mason into the late hours of the night. I've always cherished this time with Mason, but even more so now. My emotions are usually high and my tears begin to flow, as I think of the uncertainty we face in our journey here on earth with Mason. I plead with our Father in Heaven to make him healthy enough to stay here with us. But at the same time, inquire with faith in Him to know what is best for sweet Mason and our family. Honestly, my strongest desire and hope is to have him healthy, strong, and O2 free..... to run and play outside with the other kids! I pray for comfort each day to get through these emotional times, and I hold all my kids a little more and a little closer, for we never know what tomorrow brings.

"Dear Sweet Mason,
Thank you for bringing so much happiness into our home! You have been such a blessing to our family! We pray that Heavenly Father will allow us to celebrate many more months and years with you.
Love, Mommy"

Saturday, October 24, 2009

Announcing a Change to the Benefit Dinner / Update to the Waiting Game

(I really did start this post on Saturday, but life is busy!)

Mason's Fundraiser Committee (Yes, we have such wonderful neighbors that there is an actual committee that has met once a week for the last 6 or 7 weeks!!!) has decided to postpone the benefit Dinner until February or March. There was much concern that along with the Miles for Mason ride/walk and Mason's Monster golf tournament this last week (I didn't post this on the blog because it was targeted to gather a different support group than those already helping through the ride/walk and the dinner) the dinner was timed too closely to get the best possible turn out and support. They decided it would be in the best interest of all those involved in the planning, auction donating, attending, as well as our family's needs to postpone it a few months.

I know there was already so many wonderful items donated for the auction and these items will be safely kept by the committee until the dinner/auction does take place. Also, there are many of you who had already purchased tickets so please contact the committee member from whom you purchased your ticket.

We graciously thank you for your wonderful support in Mason's fundraising effort. Whether Mason is able to get a transplant or not, our out of pocket costs for his medicine, treatments, and bills that continue to come for his past surgeries, are tremendously taxing on our family. Our gratitude is beyond words and we look forward to Mason's dinner when we will get to spend the evening with so many of you.

And a very special thank you to Cecil Read and all those involved for the golf tournament. I was told everyone had a great time while supporting our sweet baby's medical fund.

An Update on Mason and our Waiting Game

Mason continues to be a little trooper, scooting around the house and yard as far as his oxygen cord will stretch. He is doing so well, gaining weight, getting stronger, and as happy as could be that it makes it so hard to believe how sick his little heart is and that basically only one lung is oxygenating his whole body. With how good he looks, how could he actually have been given a prognosis of several months after his Heart Cath on September 3rd? This continues to tear my heart to pieces :(

(This is a bit off subject, but have I ever mentioned that the 3rd of the month happens to be a bad luck day for Mason? At 3 days old on December 3rd 2007 he crashed / coded blue, was Life Flighted to Primary's and diagnosed w/ his heart disease HLHS. At 4 months old, on April 3rd 2008, he had arrhythmias so bad that I called 911 from home and he was Life Flighted right from in front of our house to Primary's. And then the heart breaking bad news Heart Cath was on September 3rd 2009! I hold my breath now on the 3rd of the month and pray to make it through the day without any bad news!!!!)

Okay, back to the Waiting Game...... we continue to get the run around from Stanford. I finally talked to the heart-lung transplant coordinator on Friday who told me they were still straightening out some insurance and benefit issues before the doctors and surgeons would look at all of Mason's info. I told her that I would not come for a consult until I knew what the doctors were thinking as a plan for Mason. So instead of scheduling our consult as soon as the financial stuff is worked out, she said she would call me on Monday or Tuesday after the doctors had looked over Mason's information thoroughly.

This is very frustrating because Stanford was the only Hospital that required an insurance pre-authorization to even look at his info, and our insurance company will only give one pre-auth(for out of network) at a time. (And it was given to them over a month ago!) Thus, we need to get Stanford's opinion before we decide whom to actually go with and give the insurance auth to for Mason's treatments. And on top of all that, if we do go forward with a transplant we will meet Mason's life time insurance max before the transplant is a completed. Also there is at least $40,000 of the price of the organ that the insurance will not cover. So Stanford will require us to turn in a medicaid application before the consult as well! We've tried before and been denied, but hey it is worth a try. (This being said, there is definitely great need, even beyond our already high out of pockets costs presently, for all the fundraisers. Thank you thank you!)

There are still 2 more hospitals we are waiting to hear back from.

As for CHOP (Philadelphia), Mark and I had a conference call on Friday with Dr. Shaddy, their head doctor over the Cardiac Transplant Team. And just a side note, he was actually at Primary's for 21 years until he took his position at CHOP in 2006. Anyways, he presented to us their offer and opinion that for Mason a heart transplant to a single lung (his one healthy lung being his right lung) would be the best option.

He then of course presented all the risks especially for Mason's unique case. The 2 biggest risks for Mason, on top of the normal risks for a heart transplant are:

1.) connecting the new heart to just one lung (because of the PVS on his left side). Has this been done before? Yes, but what Mason has is VERY rare and this procedure has not been done very many times. In fact Dr. Shaddy himself has witnessed this only two times in his 25+ years as a cardiologist. (AND these two times were at Primary Children's performed by Dr. Hawkins. But this last April Dr. Hawkins quit when he was diagnosed w/ pancreatic cancer. Because of this Primary's does not have a senior cardiothoracic surgeon at this time.... therefore leaving us to look else where for his same level of expertise. Primary's does have 3 very qualifiedcardiothoracic surgeons just not with the same amount of experience! ) CHOP feels they do have the expertise to perform this special transplant.

2.)Mason's Level II antibodies are high, at 98%. At least his Level I are 0% which are the more common antibodies, but his Level II are still concerning and can cause rejection.

Dr. Shaddy said that the normal survival rate at 1 year post pediatric heart transplant is 90 %, but adding Mason's unique risks to that his drops to 70-75%. And he also said that adding these risks in can lessen the duration of the new heart once placed in Mason's body. Normally, I believe (but, I may be off on this one) a transplanted heart can last 20 years with very minimal amounts of rejection, but in Mason's case it would at least be cut in half (that we were told would be best case scenario). If no acute rejection is involved, the patient can then be listed for another heart transplant. This being different than a heart-lung transplant. A lung transplant is a one time thing only, with best scenario lasting 4 years.

Another huge factor involved with CHOP, is relocation. Mason would need to be within in one hour of the hospital once listed for a heart. With his health how it is at this time he would not need to be admitted to the hospital while waiting, unless he worsened and needed to be on IV heart meds. But still within an hour of CHOP!! Then after the transplant he would need to be there for 1 to 3 months to monitor his recovery and watch for rejection. Being that the wait for a heart can be 1 day to 1+years, this could be a long temporary relocation! Being a family of 7, we would need to feel VERY STRONGLY that this is the right choice for Mason.

At this time as we wait for the rest of the hospitals to give their opinions, Mark and I have some big decisions facing us. In tears I now will say...."Ultimately, we feel this is a very sacred decision between us, as Mason's parents, and our Father Above". And believe me, I've always been grateful for the power of prayer in my life, but more than ever now as we look to Him for such important guidance and comfort.

Again, thank you for all of your prayers, concern, donations, and acts of service. We could not get through this without all of you!!!

Saturday, October 17, 2009

Mason's Benefit Dinner

Mason invites you to attend a very special evening in his honor:

(Please click on the above portion of the flyer to see all the details.)

Our family feels very honored to have so many friends, family, neighbors, blog "heart friends", and even those of you we've never met that have supported, served, and loved us through our journey with Mason.

This benefit dinner will be a very, special memorable evening for our family and we are so grateful to all those who are involved in putting it together. We hope many of Mason's fans will be able to join us.

Some of my dear friends have told me they are going to attend Mason's Dinner instead of giving out neighbor gifts and/ or taking part in a "sub for Santa" this Holiday season. This will be their family's Christmas service project. Wow!!! That means so much to us! We feel so loved by all of you! Thank you!

Friday, October 16, 2009

One Day at a Time

(Mason is guarding the thermometer with his life!
He did not want me to take his temperature one more time.)

We've had better weeks.

The first thing I learned when by surprise I became a heart Mom almost 23 months ago was.....".welcome to a long roller coaster ride" or in other words......expect the unexpected, take one day at a time (or sometimes 5 minutes at a time), prepare for the worst-but always hope for the best or in our case another miracle, and pray like EVERYTHING depends on your prayers!

That being said, in summary here's Mason's week:

* 6 days of a fever (99.5 to 101), not too high, but enough to make him feel yucky.

* began Lovenox shots twice a day (this is just as bad for me, because I have to give them!)
~why? it is a blood thinner used to prevent clotting. Dr. Everett prescribed it due to the speculation that a clot caused the stenosis in his upper left P veins. The main reason is to prevent other clot problems, with an underlying hope of dissolving the one in his upper left PV.

* In the last 7 days we have gone to the American Fork Hospital 5 times to have Mason blood drawn to check his lovenox level. (Where I have gone directly to their peds dept. to have it done, because their lab isn't used to doing kiddos, especially a hard poke like Mason. "Thank you and Sorry for the drama" to RN's Ashley and Summer (And by the way, I like her name!).

* Blood draws are very traumatic for Mason. He starts to cry as soon as the nurse puts her gloves on! And when you are a HLHS kid you have very poor perfusion, and most of your veins are bruised. And when your the heart Mom, it doesn't get any easier with all you've been through, to hold your baby/toddler while he thinks he's being tortured! He cries the entire time and I cry on the way home :(

* Out of the 5 attempts only 2 times was enough blood drawn to run the test. And 1 of those 2 got lost somewhere between the blood draw and the lab (sent to another hospital)!

*Entering the AF hospital peds dept. for the 5th blood draw I get a call on my cell phone from one of the heart transplant Dr's from Houston Children's Hospital. The news was not good. They decided they do not want to treat Mason. They feel the outcome would not be good for Mason. So here I am crying on the phone, the nurses hand me a box of kleenex, and Mason begins to cry as he figures out why we are back again.

* The night before last, Mark and I discovered a large soft, gushy area (about the size of my palm) on Mason's head. It seems to start at a little bump/bruise he has on his crown. (He's always seemed to bruise easy due to his aspirin so I'm not even sure where the bruise came from. All it takes is a little bump on furniture or a toy etc)

* I call Dr. Whiting (our ped.) at 10:30 pm that night! Sorry! Who reassures us if he's acting fine, it's probably just blood under the skin due to the extra blood thinners he's now on. His behavior is normal, not like that of a skull fracture or concussion, so we decide to wait until the morning to have Dr W check it out.

*But, I still worry ALL night!!

*After seeing Mason in the morning, Dr. W advises me to skip his lovenox shot until he consults with cardiology. We are speculating it was caused by the original bump and then something irritated it and it bled under the skin, like bruising below the skin. So the lovenox and aspirin most likely are the culprit. As long as he continues to act normal, for now we won't do a CAT Scan.

*Cardiology confirms to stop the lovenox for now. It seems to be causing more problems than it is worth!

*Today, Friday, brings a better day. Mason's fever has been gone since yesterday. He is happier. I'm happy I don't have to give him shots anymore, at least for a while. But this is bitter sweet ......because what if it could really help his clotted vein?!

It seems today brings an upward swing in our roller coaster because I spoke with Dr. Everett and she had good news from CHOP in Philadelphia! Their cardiac team feels quite optimistic about treating Mason. They of course would have to see him first before any final decisions are made, but they feel that the best course to take for Mason would be just a heart transplant to his one healthy lung. Philadelphia is one of top rated in the country in experience and success for high risk pediatric heart transplants. So, this was terrific news coming from them!!! I do not know the details yet because they should be calling us by Monday.

Stanford called our transplant coordinator last Friday asking for me to schedule appointments with them to see Mason. So I called scheduling who said they would have a nurse call me on Monday. But I don't know any more than that because I never received a call! Frustrating! I called them Tuesday and spoke with one of their heart transplant coordinators who didn't know any thing about Mason. She returned my call Wed, and said she is trying to track down information for me from the heart-lung team. I'm not sure who dropped the ball on this one, and I certainly don't know what they are thinking?! For, time is precious, especially if you wear Mason's shoes!

We have some big decisions facing us now. I pray that our Dear Father in Heaven will make the correct path for Mason very CLEAR to us! I know He has a special plan for Mason. We all know that I hope and dream His plan leaves him here on earth with us for many more years. But, although it makes me cry to say this...... I am at peace knowing families can be together forever someday.

I will post as soon as I know any more from these Hospitals.

Here is another cute BLUE LILY photo from June:

Wednesday, October 14, 2009

A Huge Success

Here is our sweet Mason. Mr. Miracle Mason, the guest
of honor at "Miles for Mason" last Saturday. He wasn't
quite sure what to think of the big crowd!

Miles for Mason was a huge success! The turn out was absolutely fabulous! At least 150+ people showed up to walk, ride, and buy t-shirts. It was very humbling, flattering, and heart felt for our family. Donations were extremely generous, many by people we didn't even know. Donations even came from people who could not attend, including Mason Supporters from outside of Utah. I wish I could write thank you's to each person who donated, but due to my limited extra time to do much of anything, but care for Mason and my other kiddos, and at least half of the donations were cash so I'm not sure who exactly donated......... Instead, I will right now publicly say THANK YOU!

Our family feels extremely honored to be loved and supported by so many during this time in our life which is so special, but yet very difficult. All the money raised will go directly to Mason's continued medical care, easing much of our financial stress. Words can not express how important this is to us!! We can now focus our time and energy on Mason and our family, instead of the medical bills. THANK YOU THANK YOU!!

Special gratitude goes out to:
Alejandro and Aida Vargas headed up "Miles for Mason with the help of friends, neighbors and sponsors. The sponsors were, Winder Dairy, Kohlers, Dialogue Marketing, and Evo Energy Drinks.

And as said by Alejandro ("Miles for Mason" Chairman), "The weather was perfect, the food was great, no accidents, no flats, and a great time riding our bikes supporting little Mason and his family. Thank you all !!!!"

These are the awesome t-shirts a friend designed for the ride.

Ammon was trying to help with the registration. Ha Ha!

One of the bikers trying to visit w/ Mason. He's quite shy
0r maybe it's just major stranger anxiety.

A group of our family supporters who came and walked w/ us.

Mason made a sweet new friend that day, Marion Vargas.


Friday, October 9, 2009

Finally, a bit of good news!

(This was one of the cute pictures taken by
Blue Lily in June. Mason was 18 months old)

On Monday (Oct 5), Mason had a cardiology check-up and ECHO. For the first time since April we we finally received some good news! Mason's ECHO showed some improvement in his heart function!! When Dr. Everett told me this my eyes instantly filled with tears. It was so wonderful and comforting to have tears of joy instead of tears of fear and heart break. Although, Dr. E did continue to say, "not normal, but better" .....this news still brought me a spark of happiness and hope. Okay, so this doesn't solve his left pulmonary vein problem or his incapability to receive a heart transplant, but at least seems to offer sweet Mason a small improvement in his quality of life for the time being. He has seemed stronger and has needed less O2's so this news definitely seemed to make sense.

It is speculated that all his heart failure meds are finally helping. I also know that because of so many prayers and fasting on Mason's behalf, our wonderful Father in Heaven has extended his hand once again to help our Miracle Mason at this time. This is a true reminder to me to keep faith and hope in the power of prayer and in the belief that 'miracles happen'. This may be small in the perspective of his whole prognosis, but even small improvements and tiny bits of good news lead to increased hope!

Mason also continues to gain weight, thanks to his G-tube. He he has gained 3 lbs since mid July when he got his g-tube. He is 19 lbs now! This is huge for Mason. It does make me sad though that most of his food/ calories he gets through his G-tube now, because he refuses food most of the time. He once was a very good eater and his heart failure has taken away his desire to eat. But, on the bright side, at least we had the g-tube put in when we did.

We are still waiting to here from most of the hospitals that have received Mason's medical history. His info was sent out to for their opinions on a Heart-Lung Transplant:
St Louis Children's Hospital, Children’s Hospital of Pittsburgh, CHOP- The Children's Hospital of Philadelphia, University of Florida at Gainsville , Natonwide Children’s Hospital Heart Center in Ohio,
John Hopkins Hospital in DC, Texas Children’s Hospital in Houston, and Lucille Packard Children's Hospital at Stanford, and Cook's Children's in Ft. Worth,Texas (Cook's doesn't do Heart-Lung, but they have a doctor who specializes in PVS -pulmonary vein stenosis).

So far we did hear a definite answer from only two of these. Both Nationwide and Pittsburgh said that Mason is too high risk for a Heart-Lung Transplant due to his Level II antibodies being too high. His Level I are 0%, but his Level II are 95%. For just a heart transplant that is okay, but lung transplants have a much higher risk of rejection. Although, on a more positive note, we have heard from Texas Children's and CHOP, not with a final answer or opinion, but they both are presenting at their care conferences to their medical board, the possibility to do just a heart transplant to his right lung which is healthy and has good pulmonary veins. I'm trying not to get my hopes too high, but we didn't even know this was a possibility. So needless to say, it is definitely a ray of hope and sunshine upon the dark, sad news I have been dealing with for the last 5 weeks!

Thank you to so many for the donations to Mason's medical fund. This is so kind and so greatly appreciated. I am so amazed at the extreme kindness from people we do not even know! All of the donations and money made at his fundraisers will go to help with medicine and medical bills. Thank you, thank you, thank you!!!

We hope to see you at Miles for Mason tomorrow! Also, I will post the flier for the November 5th dinner in a couple days.

(Family Picture by Blue Lily in June)

Thursday, October 1, 2009

Happy 22 months Sweet Miracle Mason!

Dear Mason, we are so blessed to have you in our family. Happy 22 months (on Sept.30th)! You are a true miracle!

Mason wants the camera every time I try to take a picture.

Mason has worn oxygen for 6 months now! I almost forgot
how adorable his cute little face is without it! This was
after a bath. He needed new stickers and a new cannula.

One night Mason decided he liked pizza! We were so excited.
But he hasn't liked it since, it just it ends up on the floor. Darn!

This is Mason's very favorite toy! (Thank you Muaina Family!)

Mason loves to brush his hair. And notice he is sitting
in a pyrex dish. He still puts his little bum in or on
whatever he can find and scoots around the house.

Helping big brother fold laundry is always fun, because
then he gets pushed around the house in the bucket.

Mason has so much fun scooting down the stairs!
(Well ,except for when he fell and pulled out his G-tube!)

Kaitlin, Mason's big sister turned 11 this month.
Happy Birthday!!!

Too bad ice doesn't have calories because he loves to chew ice!

He enjoys riding this rocking horse and once you put
him on it, he does not want to get off.

Mason has figured out how to get up the 2 steps from
the family room into the kitchen. Way to go!

What can I say? He is Mister Happy all the time!

At least he's always got his on toys on had at all times.
O2 cords!

Mason is really into dumping toys out of their container
and then putting them back in. And look at him
tangled in his O2 cords and not bothered by it at all.

Braiden and Mason have matching shirts so Braiden
coordinated their outfits and wanted their picture taken.
Oh how Mason's siblings adore him!!!

Mason Update:
On September 18th, 2 weeks after the heart-breaking news of Mason's 'pre-transplant' heart cath, we went to Primary's and met Dr. Kouretas (Mason's Heart Surgeon) and Dr. Everett (Mason's Heart Failure Cardiologist). Mark and I felt like it was important to ask for this meeting to hear Dr. K's thoughts on Mason's cath lab results, as well as his opinion on Mason's prognosis. Dr. E had also pulled up all Mason's past Operating Room reports, sedated echos, cath lab report before the Glenn.......basically anything that would give her and Dr. K a look at his pulmonary veins that have caused us this huge obstacle.

I thought that waiting 2 weeks was long enough for me to get through this meeting without crying, but I didn't get 3 words out without crying. Good thing there was a few boxes of kleenex in the room to get me through the meeting. Mark ended up getting called out of town on business so I was the only one there asking the docs all our questions.

Dr. K expressed his sadness for us. He also expressed how difficult it is for him and his team when they have a case like Mason's when they can no longer palliate or correct his heart disease surgically. He did agree with us on seeking more information and opinions on a heart-lung transplant for Mason. He was not very optimistic about it, because he said they are very high risk, but said seeking these opinions will help guide us in a decision. I even asked him what he would do if this was his child (Dr. E had already told me the day of the Cath she would never put her child through this type of transplant). He said he'd like to say he wouldn't because of the statistics, but said he truthfully couldn't answer that because he's not in our shoes. This made me feel better, knowing he understands when your own loved one is involved it would be very difficult not to keep fighting.

I asked if his PVS (pulmonary vein stenosis) was something we could have seen sooner , in time to have corrected it or listed for a heart sooner before his 2 veins were completely obstructed. As they both reviewed all the above mentioned reports, they noticed that his lower left P vein had probably been diseased and narrowed since birth. During his first open heart surgery at 10 days old, the OR reports show turbulent blood flow in that vein. So that one has probably continued to narrow over time, just part of his heart disease. They wouldn't have done anything to correct it or list for a heart because it is ok to have 1 of your 4 PV's not working. ( There are 2 on each side of the heart going to each lung).

As for the other left PV that closed off, it had been fine even in his heart cath before the Glenn (his 2nd open heart surgery at 6 months old).....but speculation is that a blood clot may have narrowed it and eventually closed it off. This is very possible because Mason had a blood clot in his SVC (superior vena cava) since 1 month old that we treated with shots everyday. It was there still at his pre-Glenn cath. but 2 weeks later when his Glenn was performed it was not there anymore. Dr. K had planned on removing the clot during the surgery, but had reported to us it was not there! I'm not clear on why the OR report at that time would not have shown an obstruction or narrowing in that upper left P vein if this is the case.?? They believe that the upper vein may be diseased just like the lower one, so if a clot did get caught in there and began to narrow just was not strong enough to stay open. The questions I asked that day seemed to create more questions in my mind!

Although you can always continue to say "what if?"......and "how come"....... I'd rather just take what the situation is now and GO FORWARD WITH FAITH.

We did have Mason's info sent out to 7 different Children's Hospitals so we should start hearing back next week! Oh how I'm praying for optimistic opinions! Dr. K did also offer to sit down with us when we get all the opinions back and go over them with us. He wants to help us understand the other hospitals' answers and help guide our decision if we we would like. As for Mason's prognosis, something I try very hard each day not to think about, both Dr. E and Dr. K say its hard to know..... but that his months with us are probably numbered. Unless of course there are still more Miracles in store for our Miracle Mason!!!!

A big thank you from our family goes out to all of you for your concern, kind messages, amazing acts of service (meals, house cleaning, help with laundry, help with homework, yard work, planning of fundraiser, donations....and much much more) and most importantly your prayers on our behalf. This has been a very hard month emotionally for me. I couldn't do it with out all of your support! Thank you, thank you!!

For now, I will continue to enjoy every minute I have with my precious little boy! I will never complain again about sleepless nights, for now it just means more time with my Miracle Mason!