17 February 2012

Another ECHO and Waitlist Status

Today's appointment went well and Eddie's ECHO showed no signficant changes from his last. Dr. Law did have Eddie get a couple chest x-rays since he has had a cough and his lungs seemed a little wet, but everything tested negative for pneumonia. She did slightly increase his Lasix (furosemide) dosage to combat the extra fluid he may be carrying around in his lungs, but nothing to be concerned about.

[Deleted video . . . ]

Based on our conversations today, it appears the selection committee will recommend Eddie be added to the UNOS waitlist as a status 1a. This is great news since that is the highest priority possible, with average wait times between 2-6 months. The rationale our doctors are using for putting Eddie at the top of the list is risk associated with his hypertrophic condition . . . where he has already had a cardiac death event.

While Eddie is on the waitlist, he will have clinic visits just once a month with an ECHO every other month. Unless he has a significant health change, he shouldn't need any catheterization or biopsy work done prior to transplantation . . . just continue to take his meds and make his check ups.

After transplant, Eddie will most likely be in ICU for a few days and then head to the floor for recovery . Overall, he will probably be in hospital between 2-4 weeks. One of the more exciting bits of news we had today was the amount of training and education Sarah and I will receive before Eddie is released. There is a week or so of hands on training we'll have in the hospital to make sure we can administer Eddie's meds (he'll go home with close to 10 different prescriptions) as well as handle all of his vitals. Who needs Med school?!

All of this culminates in a 24-36 hour sleep-in experience where Sarah and I are required to do everything as if he were at home. The nurses and doctors will be there to make sure we don't do anything horrendously wrong, but talk about pressure! We're just glad our team of doctors/nurses are so focused on Eddie's long-term success. While the surgeries, etc. are complicated, the most important elements of success are really process-oriented . . . making sure everything is done in proper order, double-checked, and then re-verified.

15 February 2012

Transplant Selection Committee

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.