Braver Than Most

Our day started early as I awoke to Apollo burning up at 2am. I asked his nurse to take his temp and sure enough, he had a 103.1 fever. She had to call both the NP and fellow on call in the CICU. Thankfully he received several doses of antibiotics since he had been in the cath lab so just Tylenol was needed. At 2:30am, with the sweetest voice possible, he asked me to play and sing “mine and Magnus’s song” which is Fight Song. He sang along with a little smirk and then asked for his own songs which are Try Everything and Day One. Mama took it all in and we had way too much fun with the flashlight his nurse left in his bed! I turned the beat down with some traditional Chinese children’s songs and he drifted off into his dreams at 3:30am.

He insisted I sleep with him which I did all during our last stay. He made sure I had enough room - he’s such a gentleman!

During the night, we heard two air flight helicopters arrive. My heart sunk at the thought of critical children being brought here at those very moments. When you come to the best hospital in the country, these are the sights and sounds you see and hear on a daily basis. From the little boy with no hair waiting with us for a lung scan to little ones who can barely lift their heads while laying in bed because they’re so weak. If you ever need to be humbled in life, just step into a children’s hospital and these tiny children with big battles to fight will stop you in your tracks. Children should never have to be this brave but they are and they do it with a sweet smile on their face. As crazy as it seems, I’m considering going to nursing school (for pediatric cardiac care, of course) because of our boys and the other little warriors who have touched my heart. They make you want to be make a difference in their lives and I can think of no greater way.

Apollo’s temp danced up and down so the whole morning consisted of making sure he was ok to be discharged. I participated in the morning rounds meeting, met with one of Dr. Emani’s PAs, and an attending anesthesiologist. There was discussion of both the Glenn and Fontan since we haven’t received word on which will be performed. As much as I’d like to know, I don’t have to because it changes nothing. When we decided to come to Boston, we accepted Apollo would be a very small fish in a big ocean. We completely trust Dr. Emani with Apollo’s life and know he will give our son the best repair possible. So we will wait until he can tell us face-to-face tomorrow what he will do to strengthen his warrior heart.

Apollo was supposed to be the first case tomorrow but we received a call once back at the patient house that he’s being bumped to the 2nd slot for an emergency case for a baby. It’s great that we don’t have to be at the hospital until 1pm but we’re obviously disappointed, especially since he can’t eat after midnight tonight. As adoptive parents know, we are sensitive to making sure our children always feel food is available to them. Apollo has really great reasoning skills so I think he’ll understand why he can’t eat but that won’t help him when his tummy is grumbling at noon!

I was hoping to wait to talk to him about his surgery until Mike got here but since we’re in the middle of a major blizzard (one they’re comparing to the blizzard of 1978!), it’s taking him much longer than anticipated to get here. Despite my protests, Daddy was insistent on getting to his son before his surgery. His flight was canceled and his only option was to fly to Philadelphia this morning and drive 6 hours up to Boston. Since the snow is coming down so hard and they’re telling everyone to get off the roads, it’s taking him hours and hours longer than normal. 

View from our room at the patient house. This is early in the afternoon and the snow continued for hours without stopping yet.

Apollo keeps asking for Daddy and I know he would move mountains (or snow by the foot!) for him. We’re hoping he gets here late tonight. I’m worried but he keeps assuring me he’s being careful and will stay the night somewhere if need be. So I went ahead and told Apollo about what will happen tomorrow. A wise friend suggested telling him not that the doctors are fixing his heart but building onto it to make him stronger and stronger. I talked him through how much better he felt after his surgery in June and how much faster he will be able to run after this surgery. Stronger, check. Faster, check. Healthier, check. Proud siblings, check. That’s all he needed to hear. My little hero promised to be brave and strong. I stood in awe and admiration of him for the umpteenth time. If I could have just a smidgen of his courage, I could do so much more in this world!

“Let him sleep, for when he wakes he will move mountains.”

So we’ll continue to snuggle until Daddy gets here as we enjoy our warm blankets and enjoy the beautifully snow-filled view outside! Tomorrow is such a big day in his life. I will follow him and be BRAVE!