This time of year is particularly tough as Blake’s final chapter unfolded with us through the holidays. While we continue to work on making new memories – we feel the weight of some of our tougher experiences affecting us.
December 9th was when this chapter started. It seemed like a typical morning until Blake’s heart stopped for the 4th time and his breathing ceased in our living room. Rob administered rescue breaths until paramedics arrived. Yet somehow within a few hours, Blake seemed fine. By the time I arrived at the hospital, he didn’t even need oxygen administered and was his normal silly self (as if the last few hours didn’t really happen). Later that day, while he looked and was acting normal, test results came back startling. They were worse than our original admission which had led to life support. It didn’t seem possible because Blake was doing so great – but we knew this was the beginning of something different.
The recommendation for a lung transplant evaluation was determined, and time was of the essence. We were familiar with several Rady heart transplant families, but learned that the hospital doesn’t do lung transplants and we were going to have to be transferred elsewhere. Our team had already been keeping Texas Children’s Hospital apprised of Blake’s condition, but no one expected a need for them to arise so soon.
Coordination began – which meant leaving the medical team we’d come to know and trust, packing our personal belongings for an unknown amount of time (estimated between 2 months and 2 years!), arranging care for our daughter who we’d need to leave behind temporarily and through the holidays, face the unknowns of potentially leaving our jobs, our income, our family, our support network… giving up everything we know in hopes of giving Blake every possibility of survival.
Then… nothing. More than a week ticked by as the transfer was ridiculously complicated. TCH had to accept Blake’s admission and had capacity issues in their unit. There wasn’t a room available for him. The insurance company was denying medical transport because Blake seemed too healthy. Our team was incredibly frustrated as they knew he physically looked good but his condition was dyer. Once finally approved, it was determined that TCH would send it’s plane for Blake, but they wouldn’t allow a parent. We pleaded. There’s no way you can send a child almost 3 years old, who can’t be sedated, with a bunch of scary strangers and equipment on a plane. The whole challenge with his condition was if he were to get too upset, his heart could stop. We just couldn’t fathom putting him on a 4 hour flight and hoping for the best; it only made sense that a parent be with him for comfort. Fortunately, that argument prevailed and instead the plan changed to the Rady team flying via Mercy Air with one parent (the other would fly commercial). The flight was scheduled for December 19th.
While we were pleased with that outcome, we had another decision to make… which parent? To make things more stressful, I had just had my hip surgically reconstructed a few weeks before. I was in pain, on crutches and couldn’t pick up Blake nor run after him if he took off. However, I couldn’t possibly manage our baggage for the three of us through an airport for a commercial flight either, much less through Houston to the hospital. We determined I would fly with Blake.
On a scale of 1-10 our anxiety was at 100, for weeks. This was one of the longest flights the medical transport team had made for a transfer, but their approach was really great in building our confidence. In preparation, they had read through Blake’s giant file, history and conferred with our experts– yet all expressed their shock when they saw him in person. Nobody believed that our miracle boy could possibly look and function so well based on his records. For me, I didn’t know how I would possibly handle a potential crisis unfolding in the air, but also couldn’t imagine not being there for Blake if something went wrong. I had to relinquish all control, and have faith we would make it to Houston without incident.
The night before we departed (2 years ago tonight) I had to leave and get a last minute X-ray for my hip, as I hadn’t yet had my own follow-up appointment. Then Rob went home to make sure we had all essential items packed. We didn’t sleep that night. We paced and cried and panicked. Our nurses and medical team cycled through giving us hugs, saying goodbyes and shedding tears. Yet we still had one more hurdle.
Before we could even get on the plane, there was another simple yet major event. The transport team needed to put a new IV port in Blake’s arm in the morning. He was so medically fragile, and I was so scared that his life was going to end there. We had a completely orchestrated strategy of waiting until the morning and not telling Blake until it was going to happen, so he didn’t have anxiety about it. When the time came, we propped up a pillow to block his view of his arm before we explained what was happening, and so that he couldn’t see the needle. We put on his favorite squishy videos and surrounded him with his favorite toys. Rob and I suppressed our fears and put on our happy faces to be animated and playful with him through those moments. Meanwhile, other ICU members congregated outside the door in preparation for the worst. As a parent, we had full confidence in the team, but the crash cart prepped with life saving medical supplies never brought comfort. Blake did get scared and upset, but luckily moved through it like a champ. Those few minutes likely took years off my life, but that only kick-started the transport day and the weeks of uncertainty that followed in Houston.
This video is from December 17. It makes my heart smile, as amid the literal chaos and logistical nightmares we had these small moments of normalcy. We called this room our “Country Cottage” which was in the step-down unit of the ICU. This was opposed to our “City Condo” which was in the intense part of the unit. We clearly spent wayyyy too much time there. Nevertheless, with monitors on and medical leads in his “jet pack” – we played and laughed together in our ICU room.
What’s missing is the big “I WUV YOU” he gave us at the end of this video. I turned it off right before he said it. In that moment, I remember Rob saying, “Man, I wish you got that…” Me too. I didn’t. But we feel it. We love you, Bocko.