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Our Grandson/heterotaxy syndrome - Goodbye Pierce

So very sorry to hear of your grandson's troubles. Rest assured I will pray for him and your family. We went through a terrible situation with our grandaughter about 2 1/2 years ago that did not end well. Lydia was born with a major problem for which there was no fix. I hope and pray that the surgeons can do their procedure that will send him on his way as a healthy happy young lad. I know the pain your family is experiencing right now with all the what if's that are no doubt in the mix. God's speed to you and yours. Lean on the Lord.
 
My heart goes your to you and your family Rennie, my thoughts and prayers too, and to the medical team.

Fingers toes and eyes crossed for a good outcome.

Stu
 
Things change.

There is a bit of a battle going on right now between the hospital in Indianapolis and the one in Boston. Seems the hospital in Boston has a department dedicated to this particular syndrome and the best of the best medical personnel in this field are stationed there. After seeing the charts on Pierce they want to transport him to Boston to do the heart surgery noting that they are better equipped and staffed for it. Indy Hosp says, thanks, but we can do it. So, surgery (in Indy) is off the schedule for Wednesday until the battle is over. I don't know it it's pride or concern for transporting Pierce that is the issue. Just hope they get it worked out.

Thanks to all for your kind words. I wish I had more to report.

Jonathan - I mentioned the possibility of your visit to Jan and she was thrilled and hopes you are able to make it. Thanks do much for the offer.
 
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Boston won.

Pierce should be flying out this weekend, Monday latest. Jan will stay in Indy till he flies out, then she will go to Elkhart to stay with friends for a few days.
 
Glad Boston won out. People from all over the world come here. Childrens, Mass General and Beth Israel are the best in the world.

I'm about an hour and a half from Boston. If anyone needs a place to stay or eat or just talk my home is open to them anytime day or night.
 
Rennie Heuer said:
Things change.

Thanks to all for your kind words. I wish I had more to report.

Jonathan - I mentioned the possibility of your visit to Jan and she was thrilled and hopes you are able to make it. Thanks do much for the offer.
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Rennie, hopefully getting the metal tomorrow morning to repair the frame on my truck. If we get it welded and off of the jackstands next week, will pm you and see about Lou and I driving down one evening. I hope and pray all is going as well as can be and the decisions are made for the right reasons. (we need a smiley with his fingers crossed).
 
Jonathan Shively said:
Rennie, hopefully getting the metal tomorrow morning to repair the frame on my truck. If we get it welded and off of the jackstands next week, will pm you and see about Lou and I driving down one evening. I hope and pray all is going as well as can be and the decisions are made for the right reasons. (we need a smiley with his fingers crossed).
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If all goes according to plan (yeah, right) Pierce will be on his way to Boston sometime in the next 72 hours. After that, unless Jan goes to Boston too, she will be a lot closer to you as she will be staying in Elkhart.
 
Bob Gibson said:
Glad Boston won out. People from all over the world come here. Childrens, Mass General and Beth Israel are the best in the world.

I'm about an hour and a half from Boston. If anyone needs a place to stay or eat or just talk my home is open to them anytime day or night.
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Thanks Bob. I will certainly keep your generous offer in mind.
 
More drama.

We thought the capitulation to allow Pierce to fly to Boston for his heart surgery came a bit too easy. Turns out the staff at Riley was telling my DIL yes there would be no problem while they were also telling medicaid that there was no need to transport because they could do the procedure in house. Of course, they withheld that information till just a few minutes before the offices closed for the weekend and my DIL was left without any recourse.

How is it that some people can play these territorial games when there is the life of a child at stake? How can they look at themselves in the mirror each morning?
 
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