Wednesday, January 13, 2010

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."

23 comments:

♥ Michele ♥ said...

Oh Summer!

What a difficult thing you continue to go through. I remember worrying about a lot of things with Gracie that turned out to never happen. So my advice would be to trust in the Lord and take one day at a time. We thought we would also be waiting for MONTHS for a heart and it was only 3 days!! So I know it is hard but things have a way of working themselves out. Mason and his test results will continue to give you clues as to the directions his life should take. Hang in there, we love you guys!!

Michele

Jennifer said...

I am so glad you have people like Michelle who have been where you are in your life. What a blessing!

You continue to amaze me...and I am praying for you and your family.

Cord said...

Thanks for sharing and thanks for the scriptures. My respect and compassion for the Stricklands keeps on GROWING. FIGHT HARD MASON! We love you!

Uncle Cord and Family

Kyle and Alli said...

Oh Summer. What a difficult time to feel like dividing your family is the only way to bring everyone together. Is there really no way that you cannot DEMAND to have Dr. Everett be in charge of managing his care in UT while communicating constantly with Dr. R. ??! This is definitely not the same situation, but before Grant was born, our perinatologist in SLC told us that she would have to meet with us weekly. Since we were driving from Logan in the middle of winter and we both had to miss work to do that, I told her I simply could not do it. We argued about it for weeks until she finally realized and trusted that my Logan OB would follow her directions EXACTLY and would talk to her on a bi weekly basis so that she was in the loop. That way, I saw her monthly which was more manageable. She was not excited about doing it that way, but she agreed after my OB worked out a plan she felt comfortable with. It seems like Dr. E. and Dr. R. should be able to come to a similar agreement. Dr. R. likely wants things followed by his normal protocol, but most California families do not have 4 other kiddos at home including another one with special needs. Don't give up hope on this option....surely they should be able to agree on something considering the extenuating circumstances!! Our prayers continue to be with your family!!

She Made Mention said...

Thinking of you and your family. If I can help you with anything. Even if you need to chat or vent... please let me know. I'm so nervous, anxious, excited for your family... I'll be praying HARD for your little man. With Love, Jess

The Simmons Family said...

Summer, it was great talking to you. I probably wasn't much help, but I am here whenever you need to talk. It's so hard to have FAITH and TRUST that it will all work out.

We'll be praying as you make some difficult decisions, talk with the doctors, and schedule the CT.

Can't wait to hear what all the Doctors have to say about the situation. Perhaps he can stay in Utah until necessary to become a 1A??

((HUGS))

MamaOtwins+1 said...

Wow- the sweet and the bittersweet all rolled into one. I am praying for health, and questions answered, and a home for all of you together as this happens.

Gourley said...

Congrats on the amazing news.... Even though it decided to come with some difficult changes. We will be praying for you as always. Let us know if there is anything that we can do. Keep Fighting Mason and family. We love you guys.

Cassie and Chad said...

Wow Summer that is heavy news! I hope and pray that everything falls into place and that the decisions become easier. We love you guys!!!

Hope's Blog said...

What an update...it truly is bittersweet. I can't imagine how much is on your mind and the many decisions you will be making over the next month. You and your family are in my thoughts and prayers. Keep your faith!

Mindi said...

Summer,
I really don't know what to say except that I know God will find a way for you to be a great mother to all of your babies. The solution will become clear for you, I just know it. So many prayers and hugs for your entire family. We're all in love with Mason.

Mindi

Staci said...

I am so glad that you are able to find comfort in the fact that God has a plan, whether you know what it is or not. This alone will help you in the months and years to come. Listen to Mason, he will tell you what is right for him (and probably for the family too). These sweet heart kids are wise beyond their years. I think that it is a powerful move to meet with Everett, Kouretas and Kaza; these are people who are very important to your family and their opinions must be heard. That being said, don't forget that they will need to point out both sides of the case to keep you well informed, but keep your heart open to more than just the struggles that lie ahead. Mason knows his plan from God and he will do his best to tell you what that is when the time is right.

Staci (angel Bridger's mom)

Brooks said...

We are praying for your family and Miracle Mason. I know the Lord is very aware of your need for direction right now. Love, The Wynn Family

Michelle said...

Summer.. Do you know what status they will be listing Mason as? I would think a 1B unless admitted, but after reading Mason's current condition, do you think 1A? Listed as a 1A, Madison waited 4 days and was released to come home 11 days after transplant. This could happen fast. You are absolutely right, your other kiddos will grow from this experience. They will be stronger and better because of this.
I am so happy that you are meeting with all the doctor's at Primary's. Dr. AK (Kaza) is brilliant.
Good luck. You can do this! We will be praying for you. You are a strong mom and I admire your strength. Staci is right, listen to Mason and you will know your answer.
With love,
Michelle (Madison's mom)

Michelle said...

One more thing... Do you think you should have Mason's Benefit Dinner before you go? I think it would help out a lot.

Who do I contact to help out?

Mindi D said...

I am so sorry to hear all that crazy news, but yet so happy that there is somewhere to look to for the future for you guys. I hope and pray it works out for all of you, your other kids will be ok i bet, kids are resilant, although the thought of leaving mine behind like that makes me really sad. You must be a strong women to have been dealt these trials. Mason is lucky to have you as his mommy. Hang in there.
Luvs
Mindi
Libbi's mom

Becca said...

Hang in there! There are so many people rooting for you guys! We spent the summer at PCMC and at the time, we were living in St. George. We moved in Oct. to be closer for Ellie's sake. But it would be hard to move somewhere I am not used to and during school. We will pray for you guys. That is the second time I have heard that quote this week. Thank you, it is hard to not be fearful when it comes to our sweet kids.

cici said...

Such wonderful, yet overwhelming news. I know many family members and friends would be willing to help at home and with Little Mason to be sure they are all cared for for the length of time Mason needs hospital care.
In the big scheme of things, the time would be much shorter than you imagine until all your family is blessed with Mason's return.
I know Paul Cardall will have some guidance for you and for now we all have many prayers and love for you.

TRUST...believe in miracles!

Ryan and Hilary said...

Oh my, I cannot even imagine how overwhelmed you must be. What a wonderful ray of hope. I know that the Lord will be with you during this difficult decision process. We will be keeping you in our prayers.

kathy said...

Do you have a grandma who doesn't work? I only ask because I am one, and if one of my 5 grandkids needed to go live in California for several months to save their life, but the rest of the family couldn't go, I would take him and go be his "mom" for however long it took so the real mom could stay home with the rest of the family, if that was what was needed. Never think that a grandparent wouldn't gladly make any sacrifice for a child/grandchild. Don't be afraid to ask them! I only wish Mason was MY grandson so I could help!
PS: I know you don't know me, but I have followed your blog for quite a while. I hope you don't mind.

Munchkin said...

Oh Summer Scott and I think of you and Mason often. I know that the Lord has something special in store for Mason. I feel that with all my heart. Our prayers are with you.

♥Stef said...

We will remember you, your family and Mason in our prayers. You have such important decisions to make. I am sure, somehow, you will be led to the right decision.

Keri said...

So so sorry that you are dealing with so much, now, Sum.
You are in my prayers and Mason will be in our family prayers, again.
SOunds like you have an amazing support group there and have so many people who love you and Miracle Mason.
I am one of them!!