So…nothing like being woken up at 4:30am with a call from the Hospital. This is how my morning began. To make matters worse, somehow both of my arms were asleep. So try to imagine with me an alarming phone call in the middle of the night from the Hospital your son is at and not being able to answer the phone. Looking back, I’m sure it was quite comical as I flopped my lifeless arms around in a feverish attempt to awake them once again in order to answer the call before I missed it. I was able to somehow “swipe-to-unlock” and answer my phone to then be informed that Beckett has been quite irritable throughout the night and that his Lasix was being switched from oral to IV. Well…….I must say that I was quite relieved that the news was not disastrous, yet on the other hand I was quite surprised that they felt obliged to inform me of that information. It was quite the catch-22. So I just choose to be thankful that Beckett was (and is) ok…just not sure how many of those middle-of-the-night phone calls we can stomach.
As I finally arrived at Beckett’s room this morning, it involved a lot of crying, then smiling, then crying, then smiling. It must have been exhausting for him. He would just flash the biggest smile, then seconds later flip-a-switch and be irate. He eventually was even challenging to console, which unfortunately inspired the decision that he may need a spot dose (or what St. V’s referred to as a rescue dose) of morphine. This actually hardly phased him, but it was strategically given to him right before some shots he needed to receive and also directly before a follow-up echo of his heart. His heart looks “ok” btw, no big changes. The main thing they noticed is that his shunt might be regurgitating more blood to his lungs than he needs right now (which kinda saturates his lungs and makes them a little more dense then they need to be). He’s doing ok though taking into consideration the fact that he’s being weaned off of drugs right now. Yeah, he’s irritable. Yeah, he cries a lot. Yeah, his emotions are inconsistent. But it’s currently tolerable. That fine-line and balance is difficult to achieve, and for that we are very grateful that the physicians are doing their best to obtain that equilibrium.
I was able to have a few people help hold Beckett for me today. An old friend of mine, Erin Cecil, came over to the hospital today and held Beckett for numerous hours. It was perfect. I just sat right next to them while Beckett “slept like a baby” in her arms, and got some good work done. She then left and must have done such a good job because my brother then showed up for the 2nd shift (of Beckett holding time) and Beckett just slept in his crib the entire time. He literally stayed asleep until Leah arrive from work at around 9:45pm and said “Hi”. Beckett immediately began to cry. Now…that could easily have been ironic timing because of how immediate the cry was after she said something, but either way I felt really bad that my brother literally just sat in the room with me while I worked on homework just waiting for Beckett to start crying and wake up so he could hold him. He was so eager to get to hold him, and it never happened. Even after Beckett woke up after Leah said “Hi”, I was able to get him to fall back asleep just fine.
Sooo…that’s our day. Beckett is “managing”. It could be better. It could be worse. So, we just hope for a quiet weekend and continue to place one step in front of the other, one day at a time (#ODAAT).
— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.