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Our Grandson/heterotaxy syndrome - Goodbye Pierce

I ahven't been on the forum for a while so I am very sorry to learn of your troubles. Sending good thoughts your way for everything to work out for the best.

I work in health care and it drives me crazy that the insurance co.'s play these kind of games.
 
Don Orr said:
I haven't been on the forum for a while so I am very sorry to learn of your troubles. Sending good thoughts your way for everything to work out for the best.

I work in health care and it drives me crazy that the insurance co.'s play these kind of games.
Click to expand...

Thanks Don. It's not the insurance company in this case. It's rather complicated, but what has happened (TTBOMK) is that the Boston hospital wants Pierce there for the operation knowing that they are the best in the field and that this is a very complex procedure. The attending cardiologist in Indy would also like to see him go to Boston. So everyone is in agreement that this should happen.

Here's the rub. Medicaid would have to pick up the tab for the transportation. So, the medicaid rep has to go to the doctor/administrators in Indy and ask, "can this be done here or is Boston the ONLY place it can be done?' The only honest answer the docs can give medicaid is that it can be done in Indy, it's just not the best place. Boston would be better. What the medicaid rep hears is that Boston is a "Like" not a "Necessity" and rules against the transport. So, in this case, it is a government position standing in the way, not an insurance company. I understand - they are not playing games, just trying to contain costs. In the mean time, Pierce is running out of time.

Lots of others, advocates, news people, etc., have become involved. We're hoping to hear some good news today.
 
Still waiting for a decision on the transportation. Today he is getting a visit from a film crew from CNN. Don't know yet when it will be aired. In the mean time the clock is ticking and there is no schedule for surgery in either hospital.
 
OK - time for an update

The CNN segment should air tomorrow, 12/15, on Anderson Cooper 360. We'll see.

The money has been raised through donations and several charities and advocacy groups to cover the cost of transportation.

All the doctors in Indy have signed off on the transfer, but medicaid would not cover the transport.

Jess will not be able to stay in the Ronald McDonald house in Boston as they cater only to parents of children with cancer. So, she will be living in the recliner next to Pierces bed. The actual date of the transport has not yet been set.

Jan will drive back up to Elkhart tomorrow to spend some time with friends and her son before coming home on Sunday. An aside, her son is getting married on Friday to a gal with two children. My grand-kid count is going to 14!:eek:

The only thing holding everything up is a decision by the Boston hospital to accept the reimbursement rate of the Indiana Medicaid. If they accept the (presumably lower) rate, then everything should move rather quickly.
 
Hopefully she can find something a little more comfortable, though I'd bet she won't rest anyway, much less sleep. If someone she trusts can sit with Pierce for a few hours, even 2 or 3, see if there is a room set aside for family to sleep. When my Dad was at Mercy Hospital in Okla City in Sept, there was a room across the hall from the main waiting room with chairs that folded out into a bed. Narrow, but much better than the chair in the room that was anything but comfortable. I would stay in the room and let Mom go down to sleep some. I tried it, but still not comfortable. I went out to the van and slept.
Here's hoping things smooth out and Pierce gets the help he needs. Prayers still coming. Jim.
 
It's confirmed - Pierce will be the feature story on Anderson Cooper 360 on CNN this evening.

Still waiting to hear from Boston on the final decision. If they give the go ahead Pierce will fly out tomorrow.
 
Please come to Boston...

As the song goes. (my apologies to Dave Loggins)

All the red tape has been cleared and Pierce should be on a jet tomorrow with a medical team and his mom bound for the children's hospital in Boston. Needless to say this is all a great relief for us. Now the real stress begins! He'll be scheduled for open heart surgery as soon as they can get him in. Likely early next week. your continued 'good thought' are most appreciated by all. Under ideal circumstances (weight health, etc.) his chances were 85% of coming through the surgery. The doctors in Boston have not given us any indication what his chances are now and probably will not before he arrives there and they have more time to look him over.

A special big thanks to Ken Fitzgerald for his challenge >HERE<.
 
Here is the CNN video that should air tonight - I hope I've inserted this correctly.

[video]http://www.cnn.com/video/?/video/health/2011/12/16/pkg-saving-baby-pierce.cnn#/video/health/2011/12/16/pkg-saving-baby-pierce.cnn[/video]
 
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