Wednesday, July 17, 2013

The long awaited phone calls.

Three weeks ago we got the devastating news that Parker's liver disease had more involvement than we thought, and that his care needed to be transferred to Children's Hospital of Philadelphia (CHOP). It's been a long three weeks of sitting and waiting for a phone call from somebody, anybody, who could elaborate. In the mean time we did some lab work to determine Parker's liver function and bilirubin levels. To our surprise, his liver functions perfectly. His portal hypertension, however, is what is worrisome.

Today we heard from the kidney transplant coordinator, liver transplant coordinator, and transplant financial coordinator from Philadelphia. All of them at once. It's still unclear if he will need a liver transplant, or not, at this time. His liver involvement is pretty mild. He has never had any esophageal varices. . He has never had cholangitis, which is infection of the liver. His liver function and billirubin levels are well within normal range. Overall, if it were only his liver that they were looking at, they wouldn't even be talking about a liver transplant right now. The problem is that once they transplant his kidneys, he will be on anti-rejection medicine. This will make his immune system practically non-existent for at least three months. While his immune system is down, he will be at high risk for cholangitis. So, the question at this point is, "can his liver be maintained and managed well enough after kidney transplant". The answer to that question will determine if he in fact needs a liver transplant as well. Sorry, I know it's confusing. 

During my conversation with our kidney transplant coordinator, it was determined that Parker needs to be seen in Philadelphia soon to be cleared for transplant by their team. We will have to fly up there for 7-10 days. During this time we will meet with the entire team, and if its decided that he needs a liver transplant, too, we will do his evaluations for that as well. As of now we do not have a definitive time frame for this. We were told it could possibly be the first week of August. 

Once Parker has been cleared for transplant by their team, they will request our donor, Patty's, records. It will take them a few weeks to review her records and then she will have to fly there for an evaluation as well. 

Once the time for transplant has arrived, Patty and her mom will fly to Philadelphia to meet us. They will have to be there for two weeks before she can be released, but she will only be in the hospital for 2-3 days. 

Jason, Parker, and I have decided to drive there. We will be there for 60-90 days minimum, so we will be bringing a lot more stuff, including Parker's current medical equipment. My little 4-Runner can't even begin to carry all of this, so we will have to figure something out. 

Out of all of this news, I wasn't that shocked. A lot of it, I expected. Some of it, I researched. But the most shocking piece of information came from the financial coordinator. Did you know that the cost of a kidney transplant ranges between $100,000-400,000 depending on the circumstances. The cost of a liver transplant ranges from $400,000-700,000 depending on the circumstances. We are also responsible for all of the donors medical costs, which we already knew about, and are happy to take care of. I can't put a price on what she's doing for us, it's not measurable. Since we are leaving the state of Louisiana, our insurance coverage drops from 70% to 50%. Our insurance case manager, as amazing as she is, is already working diligently to appeal this. Especially since we are being forced to leave and since CHOP is considered a "Center of Excellence". If she wins the appeal, we would be re-instated as 70% coverage, so please keep your fingers crossed! As you can imagine, hearing actual numbers puts things into a different perspective. I'm still trying to wrap my head around this. 

We have had several people ask if there is any way that they can help,  if they can have our permission to do a fundraiser, or if they can contact local news affiliates. You are more than welcome to. We are extremely grateful to live in a community where people genuinely care. Between our travel costs, Patty's travel costs, and all of our medical bills, we can use any help that is offered. 

One way that would help is frequent flier miles being donated. I don't have much information on how this works, but If anyone has frequent flier miles that they would like to donate please contact me at or at 985-665-5149. I would like to make sure that Patty and Mrs. Linda's costs are covered before I worry about ours. 

There will also be an account opened at a local bank soon to help with their costs. I will update y'all more with that information once everything is done. 

I would like to leave you with this...

We did learn today, that Patty could possibly be able to donate a kidney and liver to Parker. Of course, being the amazing person she is, she is 100% for this. In fact, she's the one who asked if she could. I'm telling you that in all of my life I have never met a more selfless person. There is nothing that we could ever say, offer, or do for her that would be enough to thank her for everything! She is our hero!

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