The nurses at the Eye & Ear are wonderful and caring. They worked hard to support my kids through the pain and discomfort of their recovery from airway reconstruction. They checked in on us frequently and, between the two beds, they were kept busy with IV adjusting or replacement and drain/wound care.
While they were terrific and friendly, my children responded with terror at each new person who walked through the door. They crawled to the side of their cribs where I was closest and tears flowed freely. They would wriggle frantically, crying soundlessly, trying to climb through the bars into my arms. I spent nearly every waking moment seated between their cribs, holding and rocking one or both of them. For each neb or procedure, they would sit in their crib, reaching immediately back to me as soon as it was over. After 3 days of fielding questions about whether they were “always this difficult” from a support staff member at the hospital, my insurance company approved skilled visits by the nurses who worked in my home. The relief in having that second set of familiar hands, a person who could spell me so I could SHOWER or eat a meal- which I had to do outside the room or during their sleep because Trachgirl had not been cleared for anything by mouth since she failed her swallow.
Trachboy’s first bronk post-op got the “thumbs up, A-ok” seal of approval and the stent was removed. It had been a week since we had tried anything by mouth for him so I worked at re-introducing the bottle in a chair outside our room while a nurse spent time with Trachgirl, 3 days into her post-op “fast”. Trachgirl signed milk at least 100 times per day, at the arrival of each person, because her hunger now exceeded her fear. For the next 3 days she signed madly, cried silently, batted eyes at each and every arrival, BEGGING to be given something, anything by mouth. On day 5, after much urging from me, the docs finally ran a blood panel. A resident said her bloodwork was “normal” to which I replied: “Geez. That IS gonna save me some money.” implying the no food option being equal to the food option seemed a “win-win” from my perspective… <sarcasm>
The fellow came in afterward and went over the bloodwork with me, told me about a change in her IV fluid make-up to balance some things out, and talked about putting in an Nasogastric-tube (NG) to give her some nutrition. I agreed to the NG, knowing she would have to be confined to her crib during feeding and that “welcome sleeves” would need to be applied to keep her from reaching her face and pulling the tube out, but hoping that the filling of her belly would help her to heal faster and be happier. When the nurse arrived with the feeding, she put it on a bolus rate and told me not to worry about it being too fast- after all, she was starving hungry and a full belly would only “feel good”. The feed began at about 10:45p, just before shift change, and the nurse left soon thereafter to report-out to the nurse who would be taking over for the night. Trachgirl sat in the middle of her crib looking like a beaten and defeated child: surgical scars and adhesive sutures, NG tube taped in a trail across her face & head, “welcome sleeve” arm braces to prevent her from getting her hands on her new “feed equipment”. She leaned back on the inclined crib surface and at about 10 after the hour, she began to vomit.
Trachgirl immediately aspirated the formula through the cleft from the stent, at which point she crashed, sats plummeting, alarms sounding, nurse running to our room. As her sats dipped to 68%, Trachgirl blacked out into the pool of her own vomit and I continued suctioning while the nurse ran to the nurse station to make the STAT call for the doc to get to the floor. Her heart rate dipped low, the docs arrived and re-assessed her as she returned to more stability. After a consult with our ENT, the resident removed the NG, radiology came to the bedside for a lung xray, and we waited for her EKG to be completed to be sure her heart rhythm had returned to normal. Sleep that night was a non-option for me. I spent the rest of the night seated next to her crib, holding her upright in my lap.