03 Apr Update
Yesterday morning, I took Keegan in bright and early for weight, labs, and his pentamadine treatment. His weight was the same, but it was on a different scale. We’re going to see what he weighs back on the cardiology scale on Tuesday. Lab-wise, not so good. His liver function is getting worse again, and these are the highest numbers we’ve ever seen. The only way to rule out a medication reaction now is to stop his anti-vomiting medication. We stopped it last night, and so far so good (with 2 doses being held so far). Please pray that Keegan is able to handle his feeds without this medication on board. If he does and that is the answer to his liver problems, then we’ll be okay to go home as planned. The doctors are ordering a slew of more lab tests on Tuesday to be sure. The other problem is that Keegan has developed a rash that covers his torso, neck, and arms. Yesterday, he also had red bags under his eyes, but those have gone away today. The doctor thought it could possibly be related to his liver, especially if it’s a virus affecting his liver also. We’ve begun treating it with hydrocortisone and are hoping for it to stop soon. It has made his poor skin even drier than ever. No fevers so far – so some good news!
Wednesday, we braved the foggy cold and walked around the North End. It is also called Little Italy because it was the area of town where Italian immigrants settled. As Dr. G said, you can toss a coin on any street and hit an amazing Italian restaurant. We visited Paul Revere’s house. Built in 1680, it’s the oldest remaining home in Boston. He lived there during his famous ride to warn troops in Lexington that British troops were marching toward Lexington from Boston. We walked part of the Freedom Trail along original cobblestone streets (a little rough for a stroller), and then warmed up at the oldest Italian restaurant in the North End. We were the only ones in the entire restaurant, so Gray and I had our first nice meal out together while Keegan napped in his stroller. After that, the sky had started to clear, so we headed back to the Prudential Tower to see Boston (and our apartment blinds fluttering where we had left the window open!) from the 50th floor.
Gray left yesterday morning for Dallas, and my mom just arrived to help out until Easter. Hopefully, things will start to calm down with Keegan, and we will be home by the end of the week after Easter. The weather is rainy and cold here today, but hopefully, we’ll have a nice weekend and be able to walk around with Mamie. Hope y’all’s weekends get off to a good start! We’ve posted a few new siteseeing pictures, too. Don’t forget to leave a message for Keegan. We can’t tell you how much it means to us to know that y’all are praying and following Keegan so faithfully. Thank you, thank you.