(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.