Potential Listings

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Last week we completed day 2 of 2 for the Methodist Transplant Evaluation. The medical review board will meet this coming Thursday to make a decision on Cody's case and will be letting us know accordingly. Talk about anxiety. Alas, we take deep breaths, pray, and keep the faith that it will all be okay. I mean, what else is there to do? Besides wine. Lots of wine.


However, our quest to be listed hasn't stopped with Houston Methodist. Cody's mom, Candace, and I have been hard at work the past couple of weeks coordinating with Co's insurances and medical records to pull together every test, lab, image, and scrap of paper with his medical and surgical history. All of his records have been sent to facilities across the nation that accept CCA patients for liver transplants. As I mentioned previously, transplant is not a sole cure for CCA so not every transplant center will look into Cody's case.

At this time, we have sent records to:
  • Clevland Clinic - Clevland, OH
  • Oschner Health System - New Orleans, LA
  • Indiana University - Indianapolis, IN
  • Mayo Clinic - Rochester, MN
Oschner has already contacted us and accepted all of the testing Co underwent at Methodist. They are presenting his case this coming Tuesday to their review board. We should know their decision midweek! Indiana and Mayo are currently assessing his records and will be in contact over the next week or so. Cleveland reached out and wants to see Co for some additional testing, so a trip to Ohio will be in our near future. 

People keep asking me a lot of questions regarding our attempts to list him across the country. The main question revolving around the potential relocation of our little family. Honestly, I have no idea. I don't really have a plan, which is fine considering my plan for marriage, children, and a healthy husband escaped my grasp ten days after we wed. I've adopted a "whatever, we'll figure it out as we go" methodology relying on gut instinct and a lot of prayers. The goal is to find Co a liver and get him to wherever that may be, the plan will reveal itself along the way. 

Co had another round of chemo this week. This was his first time using his port and things went so much smoother and quicker than normal! It's the little things that make chemo days a smidge better. As of right now, we have no planned appointments in Houston this week! *cue happy dance*

For now, we will continue to practice the art of patience until we know what the next step is.

I didn't get any good photos from this week, so here's one of a pouty Coco Puff when the IV team made him wear a mask while they accessed his port.

Comments

  1. Voncharleston CrossMarch 31, 2019 at 10:39 PM

    We are praying consistently that Gods Favor shows up like never before.

    ReplyDelete

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