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!!!


The G Fam said...

We LOVE, LOVE, LOVE Dr, Shaddy. He was Mike's cardiologist until he moved to CHOP. When we found out about Ryker, Mike's dad Tom actually went out to Philidelphia for business and stopped and visited with Dr. Shaddy. He was the first to suggest that their might be a genetic link with heart defects in our family. We are praying for you, and I think moving the dinner to February/March is a smart idea. You will get people that are recovered from Christmas and will be more willing to be generous! We would love to help with fundraising (I am a pretty decent at getting donations!) Hang in there, and know there are many praying for this sweet little almost two year old! Crazy it has been that long!

The Simmons Family said...

Summer, my heart aches for you. I know how tough these decisions are, and you just have to make the best decsion for your entire family.

Stanford is great, but yes, they do pre-auth everything! I should be grateful for such wonderful insurance as we have no out of pocket costs, in fact, they reimburse us for traveling expenses (with restrictions).

I LOVE to hear that Mason is butt scooting around, gaining weight and doing great!! We'll pray that the 3rd of every month is a great one from here on out! Our bad luck is always cath days... grrr.. tomorrow :(. Hopefully this one will bring good news.

Thinking of you, praying for you and know that everything will work out.

Ryan and Hilary said...

I am confidant that Heavenly Father will give you the much needed guidance and direction. We will always be praying for your little man as we all wait for many miracles for him and your family.
Much love, Hilary Cook

Anonymous said...

Summer, this is Jeff Reeves. Lisa and I are sitting in the Framily Waiting Room here at Lucile Packard. We read your comments this morning on Abigail's blog. Thanks you for sharing!

About 15 minutes ago a woman from across the room said, "Are you Abigail's parents?" It was Andrea, Owen's mom. She had been turned on to Abigail's blog by you!

Let's just say that our hearts ache for you and your family, yet we we undersand to some degree the blessing that Mason must be to you. Every breath, every smile, every touch is worth every bit of pain you feel. We cannot imagine what you have been through, which is so much greater than anything we have experienced.

When we get back to Utah, we would love to get together.


The Reeves

cici said...

I am so sorry that you have to deal with all these insurance issues in the midst of all your worries.
I know that you will be guided to make the right decision for your precious little boy.
Mason's name is added weekly to the prayer request list at my Church and
he is being prayed for constantly by many angels, I hope you can feel him surrounded with love and hope.
God Bless you and your family

Little Bear and Peanut said...

We are praying for you and your family. We would love to come to the dinner. Let us know when and where to get tickets as the time arives.

Amy (mom to Emma TOF)