Friday, February 26, 2010


Here's just a quick update:

After a lot of waiting and frustrating phone calls today, Mason is still not listed!! Hopefully Monday! We will call it Miracle Monday.......that will be the official day!

Why not today?

The transplant team here at Lucille Packard had absolutely everything ready to list him yesterday minus the final authorization from our insurance. Today the insurance kept requesting one thing after another from our financial social worker here; including all the records from this week's hospital stay etc.... What is the deal? Our insurance gave pre-auth for transplant to Stanford back in October!!! The insurance has had everything they've needed or asked for along the way of this whole process, but today they would not give the final authorization!

Their reason or excuse ??

RSV! They saw Mason tested positive for it on Monday night! They said they saw no urgency to push the approval through today because he has RSV anyways! Yikes! Why do they care ?! The transplant team explained to them that they are comfortable listing him even with a positive RSV test, because he's truly not symptomatic. (We, the transplant team and I, agreed even though they probably wouldn't accept a donor for Mason right now because he has the RSV virus it's still a good idea to get him on the list to start putting his waiting time in!) Our insurance then said they wanted to speak w/ Dr. Everit (Mason's cardiologist in Utah) about this!! By that time it was 4:50 Utah time and they said they were closing and they would continue with his authorization on Monday! Frustrating? Most Definitely!!

Esther, our transplant RN, reassured us that they would solve this whole problem and get him listed no matter what on Monday! So Monday keep watching for the official post that he's listed!

Please pray with us Mason doesn't pick up any new sickie bugs and that Monday he will get listed for his new special heart!!

ps... As you know Mason doesn't like to do anything the easy way......We are at the Stanford ER, its 11:15 pm, getting Mason's g-tube button replaced. During his last feed tonight it seemed really loose and there was a little blood around the g-tube area. I finally decided after examining it many times that I better bring him in so that it doesn't fall out in the middle of the night.

It was a good thing I did. The ER Dr. just replaced it for me and the interior balloon that holds the button in place had gone bad and was split all the way open. Thank goodness it went much smoother than the time it got pulled out by accident! Now, we are just waiting to x-ray it to make sure it is placed correctly.

Never a dull moment!

ppss....we did have to leave the R Mc House because of the RSV! We had to empty our entire room! It was a pain, but at least we've been able to stay with a very sweet member of our church here in Palo Alto.



Cord said...

Fast Sunday is this SUNDAY! Let's all FAST for a MONDAY MIRACLE!

Michelle said...

Dang it! Hang in there, Summer. You are such a strong mom and an example to me. Thank you! Good luck with everything. We will continue to keep Mason in our prayers and we are excited for Miracle Monday.
Hope you get some rest soon. Take Care.

Stefenie said...

I have followed a couple other heart transplant kids and watched as one little boy went on the list and off the list, then back on the transplant list numerous times. I know how emotionally frustrating it was for his family.

I can't even begin to imagine the side of CHD that you are on worrying about getting him on the transplant list and trying to keep him healthy so he can remain on it.

My prayers are with you and precious Mason! I know that God will find Mason the perfect heart.

Stef, Ryan, Wyatt and Logan

The Simmons Family said...

Summer... OH MY GOODNESS!!! You have been through SO much this week. I'm so happy you found a family to stay with and I hope your weekend is relaxing. Until Miracle Monday....

Kaidence's Mommy said...


Keep your chin up. We are all praying for you. We will also fast for Mason tomorrow. I know that this whole process is so frusterating. I almost felt in a panick to get Kaidence listed and every time they would take her off because of illness, I would get panicked again. You want that list time on your side. I totaly understand. Hopefully your insurance will get it together and understand 'what and why' they are preauthorizing this procedure and that they cannot just drag their feet for something like this. OK , so maybe I am a little frusterated for you.

Keep smilin though. The Lord is still guiding Masons life. Who knows, maybe this hold up IS part of the big plan after all!

Call me if you need anything!

Jamie said...

Insurance companies are so annoying! I'm so sorry that you are constantly playing the waiting game! We will keep praying and hope that he can be listed Monday. And thanks for being such an inspiration for me. Your positive attitude honestly helps me through my tough times (which aren't tough in comparison). You're my hero!

Elizabeth said...

Thinging about you as always. My prayers are with you and sweet Mason. You take care of yourself also. Love ya, Lolly

Quinney Family said...

Praying for you all

Mindi D said...

How frustrating i'm so sorry :( Hang in there. I'll stay tuned for Miracle Monday for Mason on March 1! What a perfect fit :)

Kyle and Alli said...

Insurance woes are the worst! I am so glad that you have found some wonderful kind people to stay with. I sure hope that Miracle Monday goes off without any major drama!

Becca said...

Looking forward to Miracle Monday!! We will be praying for you.

Becca-Ellie's mom

Jennifer said...

..........what a roller coaster ride!

.......praying for ya!

rlund said...

We are pulling for you!!!...and hope Monday is a Magical day!!