May 10 update – from Aaron

Hi Everyone. Thought we would send out another quick email today as way of an update on Tuesday’s events, and give you a preview of Wednesday.

Addison is doing remarkably well. She is 28 days old today, and it may have been the best day yet in hospital. Her new heart is actually beating! She is still on the heart and lung machine, but her blood pressure and heart rate are approaching those of a normal 4 week old. This is the second day in a row of significant improvement. So much so that tomorrow morning, the doctors are going let her take her new heart for a test spin. The doctors will disconnect her from ECMO and let her carry the full load. We are very excited, but also filled with trepidation as this critical step in the process approaches. We have a great deal of faith in the Surgeon, but Addison is likely to have a tough day as her body tries to adjust to the new reality.

Once this major hurdle is cleared we are by no means out of the woods, but we are at least pointed in the right direction. The next step is to remove the breathing tubes, and get her back feeding normally, (much to our delight…this also means we can hold her.) She faces a lifetime of anti rejection drugs, and extra doctors visits, plus a compromised immune system…but the quality of life for transplant patients is otherwise completely normal. She will be able to play, run and jump. Graduate high school, get married and have children of her own. All because of the selfless actions of one family we will never meet.

If you are saying prayers for Addison, say one for the donor family, but more importantly have a discussion with your loved ones about the importance of organ donation…then make sure you fill out your organ donation card. It is not done with a sticker on your drivers licence anymore. it is the gift of life. GO DO IT NOW! I just did. While I am on my soap box, I also want to stress the importance of blood donation. Addison needed a small ocean of blood products in the days following her surgery. I was shocked at how much blood a 4 kg baby needed. Neither Elaine nor I have never given blood, and once we have our little girl safe and sound at home I assure you it is the first thing we are going to do. These are simple and effective things you can do for the next time a little girl is sick, or one of your friends, or someone in your family. You never know.
I apologize if I am being a little too preachy, or pushy here….but I think I have earned a little lattitude.

Good night everyone, thank you for the inspired wishes and prayers. Keep them coming. We need them more than ever.

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