August 3rd. Last year this was extubation day. A great day for most people in this situation, another gut-wrencher for our family. While there was still a handful of notable stories we haven’t shared, we had found some solace knowing things hadn’t gone backwards in a few weeks. But when you get comfortable with your child on a ventilator, you know your perspective is skewed.
Blake had now been intubated for nearly a month, was in a fragile state and we had just heard he would not survive just 2 weeks before. He was being weaned off of a paralytic, sedatives and narcotics. Our baby boy was waking up, and we could see he was in this body on the gurney. He was a fighter, a mover, a determined spirit trapped in this medically induced state. Breathing tests indicated he was strong enough to breath on his own, all data collection and tests were done…it was time.
Extubation will typically leave adults uncomfortable, with a sore throat. For kids, it can be scary as they are just coming back to reality and not understanding why this tube is taped to their face and wedged in their mouth. For babies, they are also met with a room full of strangers and don’t comprehend what’s going on. And then there was Blake.
With Blake’s condition, getting worked up is a threat. If he gets too upset, he could go into crisis. The Dr’s acknowledged that he may get extremely frightened by the extubation, the foreign feeling in his mouth and throat and the unfamiliar faces. In some cases, they want parents out of the room for procedures. In this case, they wanted us there.
I struggled with this for weeks. Of course I wanted to be there, be strong and comfort my child – but the possibility of Blake going into crisis and losing him was overwhelming. I couldn’t bear the thought of it being “go time”, and it all coming to an end before my eyes.
The day before was the eeriest day of our 76 days. Stresses were high, three kids had horrific complications, the staff was spread thin and emotions were apparent. We asked our nurse if she was ok and what was going on. Should couldn’t legally tell us anything, but the tears that fell from her eyes said it all. The lives of the children behind each glass wall were fragile. And though we were living this on-going torture, we weren’t the only ones. We remained thankful we were still fighting. Blake was supposed to be extubated that day, and since so much was going wrong we got word they decided “no one touches Blake today.” We agreed. The energy was not good.
August 3rd. With my stomach in knots, it was the day. The morning started off with an important indicator not showing on the monitor. His arterial line (which had been in place for weeks) had come loose. Redoing it would require sedating him again. We would essentially be going backwards, but we had made great progress on weaning. The alternative was to proceed, but with one less important indicator. For me, it added one more layer of uncertainty.
Late afternoon the team gathered. They asked that we stay and immediately tend to Blake if he gets upset. We complied. The team counted down, all support staff were ready with contingencies in place, and Blake came through like a champ. No complications and no crying. Another testament of this guy’s spirit loud and clearly indicating that he’s got this.
I think we all took a deep breath and sigh of relief. And with that, equipment started leaving the room. It was a true turning of the tides. Just like that, our baby was back. With fewer tubes and less obstruction, we could admire our boy. Within minutes, we got the biggest gift – we witnessed the beautiful, amazing smile of our little warrior.
And still today and everyday, this smile is priceless.
#forevergrateful #forblake #teamblake
Posted by Leah Rodig Davis on Friday, 3 August 2018