Bitter-Sweet

I have been pondering since last Friday afternoon, when I received a phone call from Stanford (Dr.R's Nurse), how to word this post. I also have needed some time to sort out my thoughts and emotions about the "what if"s and the "how''s, discuss with Mark this phone call and how it will affect our whole family's life and future, and say many tearful prayers to our Father above. We have some big decisions to make, and feel these decisions are very special and sacred between our little family and Heavenly Father.

The Phone Call:

Mason was finally presented at Stanford's Board of Heart Transplant's "selective committee meeting" Friday morning. THE SWEET: After a long discussion, there was a positive consensus that Mason would be a good candidate for a heart transplant at Stanford. A heart transplant to his one healthy lung! The option in September we never knew existed! The option which is 10 times better than a heart-lung transplant! The option that now the 2 top rated pediatric cardiac transplant institutions have offered us! (CHOP & Stanford)

Dr. R's research that he presented was that there are only a handful of cases like Mason's that have been recorded nationwide...but those cases did show a positive outcome. He also found that if his 'pulmonary vein stenosis' has not spread by now from his left side to his right side at the age of 2, it probably won't! That is great! Why? They would not want to put him through transplant if there were signs that his right veins would obstruct as well. (Why, with all our modern medicine these days, they can't just transplant new pulmonary veins, or fix them when obstructed without transplanting the lungs as well......I don't know!!! )

Then the stipulations, that I am calling THE BITTER or the more difficult part of all this, were given to me next during the phone call.

The first: Mason will need to have another chest CT with an angiogram again, but this time at Stanford. The consensus at the meeting was that he could get a heart transplant IF and only if his right pulmonary veins still look healthy and stable. (I don't want to think about the "what if they are not", but I do know what ever the results are is part of the Lord's plan for Mason.)

The second : They would like to list Mason for a heart right after the Chest CT (well, w/in a few days) as long as the results of the Chest CT are positive! Okay here is the difficult (the part that affects our whole family more than ever!!)...., and stay near Stanford, as an out patient (or if he gets sicker, as an inpatient) until transplant ! We had been given a glimmer of hope from a social worker at Stanford that Mason could wait at home while listed, as long as he was not sick enough to need IV heart meds, and then catch a Life Flight jet as soon as his matching heart became available.

Dr. Rosenthall, who will be Mason's Cardiologist until transplant, and Dr. Olaf Reinhert (sp?) who will be Mason's transplant surgeon, both feel very strongly that Mason needs to be closely followed by their team while listed. Why??!!! Mason is not really holding his own right now. He is on O2 24/7 (any where from 1/2 liter to 1 1/2 liters depending on the day. I frequently check w/ my pulse Ox. or 'O2/heart rate monitor' to know what he needs.), he is only getting nutrition through his G-tube (he feels too yucky to eat), he takes several heart meds (at the highest doses possible) 2x a day, and according to his Dec. echo his heart function is low and abnormal with no improvement from Oct's echo. Okay, I do see there point, but I am totally capable of taking care of him at home under direction of Primary's Dr. Everett!!! Aren't I???? (And he seems to be doing so good right now at home!) Yes, but they are the one's in charge of this rare type of transplant!!!

Does this mean relocating??!!! This is the "bitter" of this "sweet" great news from Stanford! If Mason were our only child this would be no big deal to temporarily go to Palo Alto with him and live in the Ronald McDonald House while waiting ( + the 3 months required to be there locally post transplant), having Mark come visit when he could escape from work.

BUT, we are a family of 7!! I have 4 other children and never want them to think they are less important than Mason.... which If I leave them behind they may struggle with thinking this. But, until May no children under 16 are even allowed in Lucille Packard Children's Hospital (Stanford) unless they are the patient (due to the swine flu). All 4 are also in school and have amazingly great teachers this year. All children thrive on consistency, especially my Ammon more than ever. All children need there Mommy to be with them. A Mommy needs all her children, and her husband to be with her. These are the "how"s , "How do we do this?", that have put me on my knees in tearful prayer to my Heavenly Father.

We want to make this work and we will make this work if this is right for our Miracle Mason, but the "how"s, the details, the financial burden (what insurance doesn't cover), and the unknown amount of time Mason could wait for his new heart......are bogging my mind and heart down!! I even said to Mark the other night in tears, "I sure wish I knew why Heavenly Father keeps sending more loop wholes or obstacles into our life!" Obviously we have more to learn, more patients to be acquired, and more strengthening of our FAITH!

I do know how ever we work this out, it will be hard on my children now, but what they learn from this experience will make them better people as they grow up!! But, don't get me wrong, I write this with humble, worried tears streaming down my face........knowing as Mason's Mother I will provide him with every opportunity at life allowing him to fight until he is done and ready to go HOME, yet ultimately leaving him in the Lord's hands to complete His plan for Mason. At the same time I have to depend on the Lord right now with faith to help me work out the "how"s, if this is right , for our whole family!

I am grateful for this Sweet great news from Stanford! It strengthens my Hope for a longer life for our Miracle Mason!!

One of my favoirite sayings by Gordin B. Hinkley is "Go forward with faith". And this is what I will do....go forward with faith with the belief that what is right for Mason and our whole family will work out!!

Plan of Action:

1)We are trying to set up a phone call directly with Dr. Rosenthall so he can answer a few of our questions and to hear personally his thoughts on the urgency of how soon he thinks Mason needs to be listed. (I failed to mention above, I was told on 'the phone call' with Dr. R's nurse that they were thinking he should come for the CT within a month and then be listed at that time!!!)

2)We also are setting up a meeting with Dr. Everett- Mason's cardiologist here at Primary's, Dr. Kourestas- Mason's heart surgeon here at Primary's, and Dr. Kaza- the head surgeon over transplants at Primary's to discuss with them their opinions of what CHOP and Stanford have offered us. And of course I will sneak in the question one more time, "can you please just do this here at Primarys?" !!!

3)Spend a lot of time praying for direction from our Father Above!!!


And one more thing, even though we know CHOP is also a very qualified children's cardiac instituition..... we feel that Stanford is the better choice for Mason at this time. And it certainly is much closer to our home, here in Utah.



Than you for caring enough to follow our journey, to listen to (or read) my worries, and to pray for our Mason and our family.



And today, I'll leave with you a few things that are helping pull me through the fear of the unknown of what lay ahead:

“In all thy ways acknowledge him, and he shall direct thy paths.” Prov. 3:5-6

“Wherefore, be of good cheer, and do not fear, for I the Lord am with you, and will stand by you.” D&C 68:6

And a quote by President Thomas S. Monson "Though the storm clouds may gather, though the rains may pour down upon us, our knowledge of the gospel and our love of our Heavenly Father and of our Savior will comfort and sustain us and bring joy to our hearts as we walk uprightly and keep the commandments. There will be nothing in this world that can defeat us."