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!
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.