Received word today that the Transplant Selection Committee will meet next Tuesday morning to consider Eddie's case and assign him a priority status (1a, 1b, or 2). At that point, we will need to make the final decision about whether we want to proceed with transplantation. We have an ECHO appointment and Cardiology consultation this Friday so we should have more information about next steps at that point.
Thought this would be a good place to insert a link to an overview of the heart transplant process for those interested in an end-to-end perspective. This document is actually the Stanford Hospital Heart Transplant Patient Manual (SH is another of the top tier transplant hospitals in the country) and the process is pretty consistent with what we've experienced so far.
Some of you have asked about the custom code for Eddie's ICD and whether we are planning for that to happen this week. At this stage, it doesn't appear likely . . . it may be another couple weeks before we can get that squared away. I can't remember if I mentioned in a previous post, but the only risk with the current programming is that the maximum "jolt" Eddie could receive is higher than is recommended for a 3-year old. The good news is that it would only happen if Eddie were to receive six or more impulses from the device . . . which is highly unlikely considering he responded so well to the low-level testing when the surgeons implanted the device.
We hope you guys are holding up all right as this gets closer to happening. We can't imagine all the information that you've had to process both mentally and emotionally. It's a good thing that Eddie has such amazing, intelligent, articulate parents. We think about you all every day. Let us know if there is anything we can do to help as this gets closer. Love and prayers from all of us!
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