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Tuesday, March 2, 2010

Update to Valley tranplants

I posted Saturday about St. Joesph's hospital in Phoenix now being approved by UNOS to do heart transplants.

Yesterday, I made my calls. I called and left a message for our transplant coordinator (Sharon, for those of you who know the office) and also for the coordinator at St. Joesph's. I got a call in the early afternoon from St. Joseph's nurse, and she was extremely nice! I was able to give her a rundown of Gabriella's history, and she then told me about their team. Their individual credentials make for excellent people to build a transplant team! The doctor started at CHLA and did additional work at Stanford. The Cardiologist spent most of his career at Children's Memorial in Chicago. And the coordinator worked at CHLA, and worked closely with our Loma Linda team, and also at Mount Sinai on the east coast! She was very excited and even said if this went through, Gabriella would be the first transplant kiddo in Phoenix! We talked a bit about being listed at multiple transplant centers and left it with her calling my insurance coordinator to feel them out.....

A while later, Sharon called me back from our cardiology office. I really do love talking to her. She told me about how their offices met with the team at St Josephs the day before the press release came out, and they are a very well put together team! Our cardiology office has been dealing with transplant kids and sending them out for 20 years or so, so they know what it takes! The 2 teams spoke about the future, post transplant care and other suggestions. St Josephs seemed eager to take the suggestions and work quickly on getting them in place! Sharon said in a few months they should have all aspects of the process in line and she'd definitely feel good with us going there. But.... a few months or so. And I value their opinion highly... they haven't led us wrong yet!

Later that night, the St Josephs nurse called me back and said she talked to insurance. There was NO way they were going to approve Gabriella for St Josephs.... darned HMO. So... we are back to where we were. But I met a super awesome new nurse in the process and hope to get to see her, under POSITIVE circumstances, in the future!

Surprisingly, we are not upset. Sure, having a heart transplant in Phoenix would be ideal. It is 30 miles away, we wouldn't have to split up our family, Gabriella could have in-home school and therapy, we could have help from family. But God wants us in California for this, and there is a reason- that of which I do not question. And I did my work, and I tried it out as an option.

The best part of this whole story is it IS available! There are kids out there who will benefit from this center and families that will stay together. In a region of Arizona that has 10 to 20 kids per year who need a new heart, most of them can stay home to get that now! What a blessing, and long overdo for the Valley of the Sun!


The Simmons Family said...

I think it's going to be a great program and I'm so happy the valley finally has a transplant center!! Like I said, it will be a great resource for our kiddos to get post transplant care and biopsies so we're not constantly traveling for those routine visits.

I love the new blog look! Let me know if you're interested and I'll show you how simple it is to do yourself!

Andrea Gunnell said...

I'm hoping with Kyson we won't have to go the transplant least for a very long time, but it is exciting to hear that if it comes to that, we would have to possibility of staying here.

Oh, and I love the new look:)

Linda said...

I'm sorry it didn't work out for you guys but maybe it is good that she is going somewhere where they've done transplants for a long time. I would've been nervous about sending Lydia to a new transplant center no matter how much training they had, but that's just me. :)

Anonymous said...

You guys are so right God has a plan for everyone and even though we would all lik to your family together 1st priority is to get Princess G better. Like I've mentioned to you before Paul I have tons of family & in lwas in Cali VERY close to Loma Linda who are aware of Princess G and they have offered there help in any way. So when it come to that time let me know and my fam in Cali will be right by your side. Much Love The Orellana Family