Yeah that was pretty much me over the course of some weeks. Christmas was over and I was basically in the same routine as always: work, home, hospital, home, repeat. And I was like out of my mind completely. Some days I was exhausted. Some days I was irritable. Some days I was none of the above, I just kinda stared off into space. I found myself getting super forgetful: like I’d step out of my office, go 20 feet down the hall, then completely forget what the heck I was just about to do. Parts of my work day were routine too: call CVICU, ask for Nolan’s nurse, get an update. It was my way of keeping connected so I didn’t feel so off the deep end. I really wished I could spend more time with Nolan…but I had to work, there was no doubt about that.
Meanwhile, the heart team decided a different tactic with Nolan’s chest: as the swelling went down, they would basically push both sides of his chest together little by little every few days and then put this bandage over it to hold it in place. Inch by inch it went and his numbers kept holding steady, so that was awesome. All the while, Nolan kept improving enough to lose one med here and another med there, so that instead of like 20 pumps he was down to 10 or something. Hooray for improvement. Each night was the same, though. I’d go in and check in with his nurse, then wash my hands, then pull up close to Nolan and talk quietly to him. I’d pray for him, and most importantly I would always tell him he was my hero. I couldn’t imagine if it was me in that bed: I know for a fact I wouldn’t be strong enough. Some nights I would read or surf the web on my tablet; some nights we would jam out to Needtobreathe. Whatever I did, though, I always did it close to Nolan.
I tried to maintain a festive atmosphere in Nolan’s room, if all else for my own joy. We put up signs and pictures of his brothers, and I even went on the interwebs to look up how to make paper snowflakes, and I spent a couple nights doing that. The first one, I gotta tell you, came out kinda ghetto looking. And I mean GHETTO. It was squat and weird, but once I got the hang of it, those snowflakes looked dope. Nolan’s nurse (can’t remember which one at the time) tried to laugh at my ghetto snowflake…I called it unique. I even wrote out Deuteronomy 31:6 on a card and attached it to the side of his bed. I’d like to think that it was to encourage him to be strong and courageous, but you KNOW it was really more for me. I constantly needed that reminder.
Posted on November 14, 2013, in CVICU, life and tagged CHD, chest closure, congenital heart defect, CVICU, HLHS, hypoplastic left heart syndrome, nurse, zombie. Bookmark the permalink. Leave a comment.