Through Challenging There Is Perseverance

Look at this handsome face. It’s hard to believe that one year ago today this guy was coming off ECMO. The story from a year ago today is actually one of the most unbelievable – like it was written for a dramatic mini-series, but it was our reality.

We had been on life support for 7 days. The time had come. The team had tested Blake’s body the day before to determine if his heart and lungs could support their full workload. All signs were a go, and he was scheduled as the 3rd surgery of the day. The two procedures in line before us were big, so our time estimation was late afternoon on 7/16.

Around 10am Blake was being bag suctioned to clear out excess fluid – he was intubated and had regular rounds by the respiratory therapists. At that time she noticed a little bit of blood in his mouth. Though his blood was currently being oxygenated by this machine outside of his body, we had not experienced any bleeding to date. That was about to change.

Being decannulated from ECMO was finally a step in the right direction. But like we had previously experienced, nothing went smoothly. The nurses were actively attending to his mouth over the next hour. The bleeding got worse. They used dressings and cotton to stop the flow. It progressed. By noon they had called for the first transfusion. That morning the day looked promising – by noon, it looked glim.

The machine required a blood thinner called Heparin to minimize risk of clotting, but by default it wasn’t allowing Blake’s mouth to stop bleeding. The team was confident it would improve once the cannula were removed. The Dr checked on the progress of the two surgeries ahead of us. The first had gone long and our surgery would be delayed. We needed Blake to hold on.

Around 2pm the call was made to stop the Heparin in hopes of slowing Blake’s loss of blood. About an hour later we got an update that we would begin another test of “clamping” the machine to ensure Blake would be stable on his own. Roughly 15 minutes into the hour long test we received more bad news. Without the Heparin, the machine had clotted. They were not going to be able to turn it back on, even if he needed it.

There we sat quietly with anxiety building, looking at the clock and looking at his monitors. Looking at the clock and again at the monitors. We had no options left, Blake had to make it on his own. The team began assembling a back-up machine, but the transition to a new machine if needed would be no easy or routine task. We waited.

The 2nd surgery of the day was now underway, but Blake had to hold out for several more hours. He showed us his fierce determination with numbers holding strong, but time had never passed so slowly. Then we saw a nurse walk by pushing the newly set-up ECMO outside our door. It was followed by a jolting crash! Within a moment the same nurse was on the floor. Our hearts stopped. We thought we had lost our back-up machine, but it turned out to be a rolling supply drawer that tumbled over. (Funny now. It wasn’t then.)

Around 7pm, we got word that it was Blake’s turn. A relief, but with growing intensity. Because he was still getting transfused and experiencing complications they elected not to take him to the operating room, but bring the team to him. The procedure was instead completed in our ICU room.

Fortunately, the decannulation was successful and his bleeding had subsided. Our baby boy now had a wound bandage on his neck, but was holding strong on his own. His perseverance would only become more and more evident despite the obstacles. The next 3 days were spent pumping blood out of his stomach, followed by a collapsed lung. The challenges mounted and it seemed like too much for any person to overcome, especially a baby. But not this guy… He’s our superhero ❤️

#forevergrateful #forblake