Candidate?

Today we started the process called "work up" which is getting everything in order to get Madden listed for a transplant. All parties have to be on board with the decision. Madden was seen by numerous specialists and had numerous tests done, including a CT Scan and an ultrasound of his stomach, liver and kidneys.

In the morning we sat down with the transplant team and discussed our option and how fast we could potentially get Madden listed and how long he could wait for a heart. We then spoke to the head of the "artificial heart" department. Basically they have a pump that is connected to the heart and does the work for your heart until you are able to receive a transplant. This step has some incredible risks but an incredible reward if all goes well.

Both conversations went pretty well and were generally positive.

After all tests were done we sat down with the group of decision makers to hear if Madden is a candidate for a transplant. The consensus is that at this time Madden is not a candidate. They do not think Madden will survive a transplant at this stage because he is too sick. What they have decided to give us as an option is to put Madden on a "Berlin Heart" and see if his other organs can recover. If they can then he may be considered a candidate for a transplant. This decision would be made after a couple weeks on the Berlin. The head of the artificial heart department was VERY honest with us. He told us that Madden's chances are as low as they get. This solution is incredibly risky in his situation and he said we need a lot of luck...this would be a miracle if it worked. Madden's chances are not good. He also told us that the chances of Madden ever getting home are a lot lower than the chances of Madden dying. It was a heartbreaking conversation. The group then went on to tell us that if we felt that Madden had been through enough and that this was the end of the road for him they would be on side with that as well. They would offer him a dignified passing and believe we have offered him everything he could handle. This artificial heart is our VERY last chance. They are only offering this to us because they want us to feel like every option has been exhausted for Madden.

The truth is if we don't go for this, Madden will be in heaven by the end of the weekend. If we go for this Madden has a very slim chance of making it but in the end it might already be too late. His organs have been so sick for so long that they may already be too far gone. He needs a miracle.

I am struggling with knowing what Madden wants. I know that I want him to be here and to keep fighting...but it needs to be what Madden wants. Because of this we have put a "do not resuscitate" order on Madden's file. As a parent it was the hardest decision to make. But I have to believe that if Madden really crashes it is his way of telling us that he can't fight anymore, that he has had enough. And I am going to respect him because after everything this little boy has been through it is the least I can do for him. In this situation my only request is that they doctors do everything they can so that we are able to say goodbye to our son, our small hero.

My life has changed so much in such a short time. I still can't believe we are really here...that this is real. The only comfort I have if knowing that I have done what I said I was going to do from the beginning of this journey and that is love Madden as much as I can for as long as I can.

Madden I love you. I love you. I love you.