Tuesday, July 23, 2013

Exciting day!

So, I've kind of been withholding some information from you guys for the last few days. I wanted to make sure that it all panned out, and get all of the details of the event before I made it public information. Last week we were contacted by an old friend about an annual charity golf tournament that is held by his company, ASAP Industries. This year they were interested in doing the tournament for a local child whose medical situation was in need of some financial help. This long lost friend of ours had been given our names and information from one of his family members who can relate to the situation we are in. A few days later we got a phone call from the owner of ASAP Industries, Timmy Deroche, who told us a little bit more about this golf tournament that he holds every year. He scheduled an appointment to come over and discuss the details and get to know us. and Parker, a little bit more. He mentioned that he was going to bring someone over to take a few pictures of Parker for the flyer, and I didn't think much of it.  It wasn't until today, that we fully grasped the magnitude of this tournament. When Timmy showed up today, he had local photographer Kirk Voclain with him, and that's when I realized that this is much bigger than I thought it was. When he said he was bringing someone to take pictures, I envisioned his secretary, or someone of that nature. So without further ado, here are the details of the next golf tournament in Parker Porche's name.

The name of the tournament is The Million Dollar Shot Tour. and it means just that. The top ten golfers of the day will have the opportunity to shoot a hole in one for  ONE MILLION DOLLARS! Now don't fret, there are plenty more opportunities to win big at this tournament. On holes 3, 14, and 17 golfers will have the opportunity to shoot a hole in one for $10,000, and on hole number 9, golfers will have the opportunity to shoot a hole in one for $20,000. As if those prizes aren't enough, golfers will also have the opportunity to win prizes for low gross and low net to be given to the top 3 teams and closest to the pin and long drive for both morning and afternoon rounds. Don't think the odds are in your favor? Don't worry, no golfer will leave empty handed. Every golfer will be given a $100 TPC gift card to go towards merchandise, and all beer, mixed drinks, catered breakfast, and lunch will be provided.

 The tournament will be held on October 11th at TPC of Louisiana off of Lapalco Blvd. in New Orleans. It is a four man modified scramble, and each team entry fee is $1100, which includes green fee, cart fee, range balls, breakfast, lunch, all beverages, and the $100 TPC Gift Card towards merchandise. Oh, and don't forget the opportunity to win $10,000, $20,000, and ONE MILLION DOLLARS!

Haven't seen the official flyers and registration forms yet? Interested in sponsoring? Contact timothy@milliondollarshottour.com

Thursday, July 18, 2013

Happy tears!

For everyone who was interested in the bank account information, an account has been opened at Coastal Commerce Bank.  The account is under Patty Martin subtitle Parker Porche Medical Fund.   The account number is 1112564. Checks can be mailed to Patty directly at 123 Saxony Drive Houma, LA 70364 or brought directly to any Coastal Commerce Bank.

All donations will be used towards travel, lodging, food, and medical expenses while we are all in Philadelphia. Thanks everyone for all of the support! The generosity, prayers, and support that we are receiving is overwhelming! Within an hour or so of the blog being posted, both of Patty's flights and my Aunt Linda's flight were taken care of by some very generous people! To those wonderful people, thank you so much! We have also had a friend come forward with miles through southwest or American Airlines. It could possibly be enough for one person's round trip flight for us. Once again, we are extremely grateful for everything!

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 kldupre2@yahoo.com 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!

Sunday, July 7, 2013

Urology pre- transplant

On Tuesday of last week we spent the day at our "favorite place". (Insert sarcasm here) Yes, you guessed it. we were at Children's Hospital AGAIN! That is what took me so long to post this. Two days there wiped me out emotionally and physically. Now that i have rejuvenated, I can get you up to speed. Parker had a VCUG done at 8 a.m and then we met with Dr. Roth in urology at 10. In the VCUG, the radiologist inserted a catheter and pumped saline into Parker's bladder. The point of this was to determine how much "urine" his bladder can hold. Remember, Parker's bladder has never had ANY fluid in it and he has NEVER peed. So, before we went into the procedure my mind started to wonder about everything, and I thought, "Well if they put something in then it has to come out somehow, doesn't it?". But I kept my questions to myself in fear that they were common sense and I would look like a complete idiot. So when we entered the radiology room, the team asked the reasonings we were doing the procedure, and I told them. Low and behold, they were just as baffled as me! One of the tech's looked at the radiologist and said, "Well, he has no kidney's and has never used his bladder. This is a first. Think he will pee it out?". The radiologists response.. "Well we are about to find out!"

When we met with Dr. Roth afterwards he told us that Parker can hold about 40ml's in his bladder, but that the pressure started to back up into his kidneys, also called reflux. He said that his reflux was low grade,and that it usually resolves on its own. He also said that it could have been caused by too much pressure pumping in at once. The problem that he noticed was that Parker can only hold 40 ml's and that the average two year old hold about 150 ml's. I, however, think that it's impossible to expect his bladder to hold the same amount as an average two year old. After all, they have the advantage of USING their bladder for two extra years. 

There are two options that they may take. One is that they will take a wait and see approach. Usually the bladder will stretch on its own post transplant. As it fills and expands it stretches. The con with this that high grade reflux can cause damage to the new kidney, so he would have to be monitored closely to make sure his doesn't get worse. The second option is to do bladder cycling before transplant. Bladder cycling basically means that they will put a catheter into his belly and to his bladder and we will flush saline into it every day to stretch it before surgery. I've talked to several "kidney moms" and none have done the cycling, so we are hoping that Parker won't have to either. 

We have another fun-filled day at Children's Hospital Thursday with the GI team. Hopefully by then someone can give us answers on what's going on. 

Aren't they so cute?!

Tuesday, July 2, 2013

Just another day in dialysis clinic...

For once we had a "normal" day in clinic. It was refreshing not to have him sedated, kicking, or screaming. Our dialysis team is pretty awesome with the way they care for Parker. They let him scoot around their unit on his scooter like he owns the place. They blow bubbles for him as soon as he asks for it. They are pretty great. There isn't much new to report. We did an ultrasound of his liver today so that we could send an updated one to CHOP. Now we just wait for the call from them. Those of you who know me know that the waiting ,and "I don't know", responses aren't going over very well. I'm not a very patient person.

I am very proud of my big guy, though. He is always so brave when we have tests to do. 

 I think he may be a radiologist when he grows up. He's all about pushing buttons. He even tried doing his own ultrasounds. The lady thought he was hysterical. Of course he charms all of the ladies, though.