February 28th, 2011
Dr Sandhu back to him for an EUS (endoscopic ultra sound) Cody is a little nervous to see him cause last go around was not a good one. (we were told his "stent" that he was going to insert did not work needed a liver transplant, and then ended up at the ER with pancreatitis. But this time around he wont be doing any fishing around in there like last time, they want to see the images of the other organs to make sure no problems with them that need to be fixed before any kind of transplant surgery.
February 22nd, 2011
Oficially on the list! advised 6-12 month wait time. But obviously could take longer depending on availability and how Cody is feeling. But Yes the wait begins!
February 8th, 2011
Cody has to see a psychotherapist..yea we all new he was crazy we finally get him to admit it... No not really they like to know what frame of mind the patient is in and also our insurance requires it.
January 31st, 2011
We go down the the hospital to get many tests done! We start at 9:30 and last appt is at 4:30 so a full day of poking and prodding to Cody and me reading a book and directing which way to go for Cody. But we are getting closer to getting on the list.
We had a very very full day can't believe that we actually made it thru the day all on time with our appointments, obviously that was our main concern since we hate being late to anything, especially me!! But we still have more appointments to go to but more then half way done!
January 24th, 2011
Well Cody is in the process of getting his dental clearance. We thought the world would be against us on this one with Cody and the fact that he felt he needed to work instead of go to the Dentist. But luckily not as bad as we were expecting. Chalk one more blessing up on the board! Tomorrow we can send the clearance to the transplant board and hopefully get the tests started and then finally be on the list, and continue to wait some more. But with each new day we are moving forward in everything we do. For some it looks as though we are moving backwards, but for us each day brings us closer to our "New Life Day."
January 18th, 2011
Meet with Dr. Frech with the Utah Board of Organ Donor's to start the process of testing to get on the list.
With getting on a Donor list you get a "Score" from different tests that are taken. So far only blood tests have been done. You have to be a 12 to be on the list and Cody is a 17, we have heard normally you have to be at least a 30 to be at the very very top of the list. I guess we can say we are half way there? But we have many many tests still to come. We have to prove we can handle what is to come health wise..Cody has to get alot sicker in order to climb the list. We are confident we will get a liver it all just depends on when and how much do we have to endure to get it.
Well we met with Dr. Frech...LOVE HIM!!! he is going to be really good he talked to us like he was part of the family. He took time to answer every question I had in my notepad that have been in the brain for the past week. What we love the most is the fact that he said if Cody is to the point that numbers don't show a need for the liver right then...but his illness does and being our doc he will fight for us..Yea he will fight for us! that is just what we needed somebody that has the say and is fighting for us..
On Thursday we go back down to the hospital and we start the process. First the transplant team meets with us and goes over things. We will meet with the Doctors, Surgeons, Pharmacist, a Nutritionists, Dietitians, Social workers to talk about what emotional and type of physical that we headed up against. We are grateful that there is a team like this that can help us through this hard time. Then from the end of the day we will then be able to start the testing which will be checking for anything that might be a problem post surgery and if can handle surgery this will also help determining the "score" it can make us go up or down on the list but will help the doctors know what they are up against. He did think that possibly the illness and the pain and everything is going to come fast because of how fast the liver disorder has came on and taken over. So we are terrified but we can do it. We will have to be going down to Salt Lake each time that he gets admitted because they want to be able to keep a very close eye on him which is really good.
But over all we are feeling really good about everything and glad we are blessed with the technology and knowledgeable doctors that we have.
