We spent a very quick 48 hours in Palo Alto this week. Owen is looking so good lately!! His weight is dropping so fast and he has lost at least 12lbs since December (eek!). He is eating everything in sight so it's not from lack of calories, I think he is just going to be a little guy. Transplant clinic went well, his echo, ekg and labs all looked amazing! Nancy (NP) heard a "whistle" and used her fancy stethoscope to record it on her iPhone app to show to the docs. It's an "atrial rub" and it was interesting to hear his heart whistle. After clinic on Tue, we visited Quinn and Tyler in the hospital and then headed to lunch. We had dinner at the RMH with other heart families (one from AZ, one from MN) and caught up with everyone. BINGO was a bust, but we saw more heart friends (Cemaia and her mom) and then we headed back to the hotel to crash.
Wednesday morning was biopsy day and we were bumped later and later as the day went on. We visited with a new family in the CVICU, a little girl waiting for her second transplant due to coronary disease as well. Owen rounded with the docs for a minute and caught up with all the nurses. He must feel like a celebrity everywhere he turns because people are yelling his name and are just so thrilled to see him!!
We finally checked into biopsy and I got him to sleep by 1:15. He had a super speedy biopsy and his SVC gradiant looked low enough that we didn't need to stent it. He woke up and we barely made our flight home... it was a rush!
Owen's pressures are super low (2, 6) and his heart looks great! His biopsy results came back with another 1B Rejection which is mild, but still there. Bummer. It seems like whenever we wean the steroids, his heart just isn't thrilled. So we are proactive and try to stay ahead of it before it gets worse. We will increase his steroids again and head back to Palo Alto in July!!
Owen had a fantastic time, loved every minute of it, and now we are ready for school to end! I have a lot of catching up to do over the next week since I finally have a little break as well. :) Stay tuned...
