I remember hearing so much in nursing school about how nurses function as the patient’s advocate. I remember starting my career and learning what that meant. I am now learning how universal that feeling is. How you can feel the exact same emotions and heartache and fight standing in a crowded ward with patients and families who barely understand you, make-shift equipment, and decisions being made based on the accumulation of knowledge from a group of doctors and nurses from all over the world with various backgrounds and experiences. It is odd how it all comes back and I am once again reminded that people are people, mothers are mothers, suffering children are suffering children, and nurses are nurses, no matter where they happened to be born or what circumstances they happen to find themselves in.
Baby Greg didn’t have the miraculous post-surgical recovery that we all hoped for. His trachea is “floppy”. Apparently, his little body had become adapted to having the cyst on his neck, and since he has been extubated, he has not yet been able to breathe well on his own. He is now on CPAP (which, for you non-medical types, gives him pressure down his airway and keeps his breathing tube open instead of collapsing shut). And, for you medical-types, we have had to rig it up here on the ship due to Greg’s desperate need.
I spent most of the day Tuesday with baby Greg, watching him struggle to breathe. The boy was absolutely exhausted. Whatever energy he could muster up, he was using to gasp and keep his body oxygenated. By two o’clock, I absolutely couldn’t handle it and we called a meeting to find a solution for our little one. We all knew that Greg was having troubles. The problem is that his issue (officially called “Trachea Malaysia”) will not resolve overnight. Typically, children take a number of years to outgrow it. At home, we would pop in a trach. Not so simple in Liberia.
After an hour of deliberating, the team of brilliant (I mean that honestly, not sarcastically) doctors and anesthetists were at a loss. If we give Greg a tracheotomy, we will solve his breathing problems, but that is a long-term intervention. One that we are not able to follow through with, and most likely would not be able to be properly cared for once the ship sails away.
But Greg was still laying in front of us gasping and retracting and breathing over a hundred times a minute, and it wasn’t ok. There had to be a solution. So Greg is back in the ICU on make-shift CPAP to help him keep his airway open. And that night, I got to see Greg relax and the panic-stricken look from his eyes disappear. For the first time in 36 hours, Greg fell asleep. He stopped sounding like a dying duck every time he took a breath. Nurses have been in the ICU day and night since then doing essentially nothing but keeping the mask on his face that delivers his airway pressure and silencing the ventilator alarm that goes off about every three minutes. I would do it for the next month if it would help his little soul.
It isn’t a long term solution. I don’t think anyone really knows what will happen with Baby Greg. He really needs a miracle.
To be honest, if a miracle is going to happen, I think this is the place. Ali and I were watching “So you think you can dance” after shifts of taking care of Greg and one of the contestants made a ridiculous comment that “they needed a miracle”. Ali laughed and said “You have no idea what a miracle is”.
So, can you pray for one? There is this horrible helpless feeling that nurses get when we want so badly to help and feel so strongly for a patient’s situation and we know that there is nothing we can do. I am there. I hate that there is no solution. So, I will wait for a miracle.
