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.


  1. love the updates! This is good news - yea! Eddie is so cute in all his photos =) Keeping you in our prayers continually - love you guys!

  2. Hi Harper's~Just checking in on Eddie's progress. I'm glad to hear about the 1a status. He's definitely "a-1" status in our book!! :) We think of you all often! Love you!
    ~Ca Powells

  3. Hey guys! I'm excited to read this update! Miss you guys and think of you everyday. Is it bugs life?? :)

    1. You're the winner, Whitney . . . well done!

  4. We're glad to hear that Eddie is at the top of the list! It seems so amazing that he'll be able to be home during this whole waiting process! I'm so grateful you are working with such a great team of doctors. Little do they know how many people are rooting and praying for the work they are doing for our Eddie. Love you guys!

  5. Thanks again for all the updates. Just thought I'd let you know, I figured out it was bugs life before reading the comments. ;) Now if only I had already known what was going on with Eddie's echo then that might actually be useful knowledge.