27 Mar Update
Ok, so Keegan technically made it 27 days without vomiting. We had a really great morning, exploring Boston Common, the Public Garden, and Newbury street (that’s LOTS of walking, y’all) before the rain set in this afternoon. We made it back to the apartment for Keegan’s nap. He started retching and coughing every now and then after his nap. We had a nice visit from Judy Maggard, a friend from Baylor, who brought him a great bear and Baylor hoodie. Not 20 minutes after she left, the onslaught ensued. And it was big. Although he seemed to feel much better after it was over and his feeds had been stopped.
We emailed our GI doc here, who (again, I am in such awe of this man…Chelle, you are so right about him) emailed me back in 10 seconds flat. What would the world be like without Blackberry? Anywho, we may go back in for labs tomorrow. Evidently there was a miscommunication, and our cardiologist wanted labs today. Oops. We’ll restart his overnight feeds and see what happens. We may have to go back up on his oral antibiotic that was reduced upon discharge. Still no fever. That’s good because I hadn’t posted that when the PICC line was pulled, there was some bright green discharge around the site. We thought it was going to be cultured, but we haven’t heard about that yet. Since the PICC was the last thing done as we were walking out the door, we basically said “call us if there’s a problem” and walked out. No fever, no problem…yet. So, please pray that the green stuff doesn’t come back to haunt us tonight.
We’ve posted a few new pictures of Keegan’s last day at Children’s Hospital Boston, our temporary apartment here, and our first day of sightseeing. Thank you SO much for your prayers. Lest you wonder if they truly work … Sweet Aaron was discharged yesterday! Miss Avery’s parents are on the road to recovery, and she has not shown symptoms of getting the virus yet! (Please continue to pray for her though, as her labs are problematic at this time.) Little Summer is fighting hard and hopefully will be on her way home soon! Thank you, thank you for your prayers for these dear children and their families.