Morgans Story Part 3: The Golden Month

On October 26th, 2021, Hank was scheduled to have his first open-heart surgery, the Glenn. As I mentioned in my previous post, his surgical team had apprehension about this surgery due to his pulmonary pressure. They didn’t think it would benefit Hank at all if anything he would become more tachycardic with a higher respiration rate due to the increased blood flow.

Shey and I wrestled doubt and anxiety about Hank’s upcoming surgery. If he wasn’t a candidate for the Glenn, what other options did we have? On the 24th, Hank’s attending cardiologist and his surgeon canceled his surgery and we scheduled a care conference with the whole team. Shey and I were relieved Hank didn’t have to have a surgery they weren’t sure about but apprehensive about what this meant for our kiddo.

A few days later, we were invited to the conference room outside the ICU with our social worker, surgeon, NP, nurse, and the attending cardiologist. Our hospital family. Over the past 4 months, these people had become our family- we spent every day with them. They knew and adored our son. They joked with us, shared stories about their families, listened to our hopes for the future, comforted us when we were upset, etc.

Over the next hour, we chatted about Hank’s future. Surgery was not an option. After consulting with Texas Children’s, our surgeon and his colleagues agreed that a heart transplant would be the ONLY option for Hank’s survival. And we had to wait to get approval from the Transplant Team at Primary’s to even take on his case. I think the reality of our situation didn’t hit us until later. We cried together because it was terrifying to think that Primary’s may not want to help Hank.

To make a very long story short- two days later our approval came. Hank was going to be a heart transplant candidate in his home hospital! Relief washed over me as his surgeon gave us the good news. Being listed for an organ is a LONG process. It doesn’t happen in a day. We had imaging studies, 8 hours of family lifestyle education, tons of blood work, financial education, and a mountain of paperwork to read through and sign within the next two weeks. Hank’s cardiology team wanted to get him listed as soon as possible because we weren’t sure how long it would be until his condition started to deteriorate. We hoped to receive our wonderful gift of a new heart before that ever happened. Hank was still what his team considered, “critically stable”, meaning he was dependent on high flow oxygen support and an oxygen monitor and couldn’t leave the ICU, but he wasn’t…like…actively dying? I don’t know if that makes any sense, but Hank acted like a NORMAL baby, just attached to a ton of wires, monitors, and tubes.

On November 15th, 2021 at 7:00 AM, Hank was listed for a heart transplant at status 1A (this is the highest priority). Shey and I read over the transplant letter multiple times…what a crazy moment to celebrate! We received our 90’s heart TX pager the same day. Shey thought we looked like idiots toting that thing around everywhere we went, but I considered it our badge of honor. If the pager ever went off, we were to report to the hospital within an hour to sign paperwork for Hank to go into transplant surgery. Funnily enough, our pager DID go off one night! We shot out of bed with our hearts racing to discover the battery was dying-the chirp was a signal to change it.

Now… I’m going to backtrack just a little. I like to call the last week of October and until the second week of December our “Golden Month” (plus a little more, if you will).

Hank’s “Golden Month” was…blissful. As blissful as living in the hospital can be. I wish I could list all the wonderful moments of this time, but this post would be a mile-long.

I would get to Primary’s around 10 AM, and Hank would just be finishing up PT or OT, depending on the week. He would be cranky after spending the last hour rolling around on the ground, practicing sitting up, playing with toys, or doing tummy time. As soon as I called into the CICU phone to get buzzed in, I could hear my kid dramatically resisting from his room down the hall. If I got lucky, I would be able to sneak in 2510 and peak around his therapist’s shoulder, where he would catch my eye, stop crying, and BEAM at me. Yes, my kid had the cheeeeeesiest grin. IT WAS THE BEST. :)

10:00 AM-6:30 PM was Mommy/Hank time. After I got to the hospital, I could usually sneak in a half-hour of rocking him in the chair and reading books with him before he would doze off on my shoulder or in my lap. After that, we would snuggle as much as my body could handle, then I would gently set him in his bed for his nap. The thing about heart kiddos is they sleep a LOT. Hank would nap multiple times a day which was normal, as he was growing rapidly and trying to keep up blood flow with half a working heart. When he would nap, I would fold and put away freshly laundered clothes and blankets in his closet, clean and disinfect his room, or work on art projects. If I wanted to nap too, then I would lay him on his gym mat on a pile of blankets, grab my pillow, and crash next to him. I woke up multiple times to nurses peaking under our room curtains, oohing and aww-ing.

When Hank wasn’t asleep, we were playing! He loved to kick his cow rattle, grab and shake his toys, and listen to music. We watched TV, snuggled, and read every book that kid owned multiple times a day. We did handprint art like crazy and decorated every square inch of Hank’s room with hearts, photos of family, and holiday decorations. Hank was sitting up pretty well at this point, so he enjoyed getting to do things independently. He would put his chapstick on by himself, chew on his fingers constantly, and babble at everyone! He had music therapy a few times a week, and our music therapist would stop by our room with rattles and his guitar. We would jam out and dance to Bruno Mars covers and baby songs. I would bounce Hank as he shook his rattle and grinned at everyone.

Hank was also a social butterfly. He LOVED people. He was not stranger shy (which would be a problem in the outside world but worked to our advantage in the hospital). So we took advantage of that and walked around the CICU/ PICU as often as we could get away with! Hank would grin at the nurses as they played with his lion slippers or squeezed his cheeks, saying, “Hanky poo! We love you!”

Some of my best memories are of walking around the unit and getting to visit with the people my baby had grown to love as he smiled at them adoringly. We called ourselves, “The Entourage” because it took a nurse, a mama, and a respiratory therapist to tote Hank, his IV pole, and his oxygen tank around.

Around this time, Shey and I were doing multiple cares unassisted each day, including diaper changes, baths, changing bed linens, changing his clothes, and adjusting some of his monitors. As soon as Shey came in at 6:30 PM, I made the choice to go back to the Ronald McDonald House or stay and hang out. Usually, it was the latter. It was an absolute joy to see the way Hank lit up when his dad walked in the room. He would immediately start to babble at Shey. I can only imagine; he was probably tattling on his mom and all the crazy nurses about what we made him do that day. We would spend the next hour playing or working on developmental therapies together before it was time to start getting ready for bed.

I’m sure any long-term hospital parent can tell you they have a routine at bedtime. Shey and I had Hank’s down-pat by October. We worked like a well-oiled machine, swapping the baby back and forth as we stripped and changed his bed, took off monitors and his EKG leads, bathed him, lotioned him up,

hooked him back up to his machines, and dressed him again. Hank took it all like a champ. By the time we were done, everyone was tuckered out! Shey would hold Hank in his arms and sway until he was snoring peacefully and we could put him in bed. Many days, our sweet babe would try so hard to stay awake- peeping and smiling at us from his bed every few minutes to make sure we were still there before finally succumbing to sleep. We would turn on his space lights and his sound machine, and turn the lights off before slowly sneaking out of his room and whispering goodnight to his nurse.

The hardest part of our day was saying goodnight. I HATED IT. My heart still hurts at the idea that we left the hospital every night after our baby went to sleep. I can’t even count the number of times we almost turned around and went back into Hank’s room for one last kiss. One last hug. One last “Goodnight love…we will see you tomorrow.” For six months and six days, we left a piece of our hearts at the hospital every day.