Today, Tuesday, Jennifer, Joey and I will be traveling to Georgia. Jennifer’s testing for living donor is scheduled for tomorrow and Thursday. Her first test is the CT scan. This test will be the one that determines size. As we all remember no one has made it past this test. Through out this process there are many disqualifying steps and procedures. We ask for you to pray for us as we travel, and for Jennifer while she undergoes the living donor work up.
Late yesterday we had our first bit of good news that we have had honestly since Aiden was born. Unfortunately on Friday the UNOS (united network of organ sharing) replied with a denial to our apeal to put Aiden at the top of the list. We were devested. I mean ablsoutley crushed. This meant that Aiden had lost his hope to get an organ. His only hope was to get a living donor match. You see the board has a maximum of 21 days to reply to an appeal. If the board cannot make a decision during that time, then the points requested automatically are applied. Last Thursday was the end to the 21 days. On FRIDAY we received a note that Aiden was denied.
Everyone was shocked and angry. The transplant team, and our transplant manager worked to fight this ruling. Immediately Aiden went to the hospital for lab work. They wrote a grievance about the delay on the reply. We were looking at another 21 days to hear anything.
As a wonderful and beautiful Christmas gift, the UNOS board gave Aiden the 40 after acknowledging hat they did indeed take longer than their 21 days. Automatically Aiden received his 40 PELD score! The 40 is only temporary. Another board at UNOS has been sent the request. They have the power to deny or keep the number given to us. Please pray that Aiden continues at the top of the list. And during this time we receive the call for a liver while he is at the top.
We know that God sent us this set back, to remind us that what we face will not be easy sailing. We have been floating on fumes thinking that once we just get his liver we will all be okay. Well, it is time to recharge. We have a long road ahead of us. Aiden must be able to not only get the liver, but survive and recover. With help from you, prayers, and strength, we will overcome these obstacles.
We are leaving this morning to head to Atlanta. Please pray for Jennifer, and us while we travel. Pray that Aiden stay strong. We had to print out hospitals that are on the way to ATlanta in case of another bleed.
We also wanted to thank everyone for the support. I did get an oppertunity to get online last week and see everyone stand by us. It helped so much. We are very lucky to have friends like you. Thank you for the amazing auction. We are blown away by the giving and selflessness.
I will have someone update for us. PLease keep checking in! XOXOXO
Lisa
Save a life, be an organ donor
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Kick on, baby!
But I’m sure he’s watching over Aiden now!
Really severe weather is past downtown Houston now and when the power came back on, the first thing I had to do was check here.
)~ Buckle Bunnies 