The tapestry of the life of a medically complex family

A month after arriving home, the twins both needed surgery to correct the narrowing near their vocal cords in their airway. The ENT explained that there was scarring and damage in both their airways because they were so small and intubated immediately, and then repeatedly when Trachgirl removed her own tube or they wanted to trial them breathing on their own… The upper airway of both kids was so obstructed and narrowed by scar tissue that, were the trach ever to fail, no doctor would be able to intubate them from above to save them. That was all the convincing I needed to get things done as soon after their arrival as possible. The surgery has two parts; first harvesting a rib for cartilage and second grafting the cartilage to the inside of the subglottis (area under the vocal cords) and placing the stint that holds it in place until it heals, fused to the area as additional rigid support for a more open airway. This surgery would not restore my children’s airways to a level where the trach would not be needed, but would hopefully improve their ability to make more sounds and make them safer in case there was a problem with their trachs.

Trachboy went into the hospital first: July 19, 2007.  1 year, 4 months & 17 days old; corrected age: 13 months. He had made only one sound before going in for this surgery, a sort of “aah” as air mistakenly escaped through his damaged vocal cords. He went in early in the morning and was not moved to the PICU to begin recovery until after noon. He was so small in the giant PICU crib, connected to tubes and wires, getting support to keep breathing while he remained under sedation for the first night. I went home that night to be with his sister, the docs convinced me there would be no reason for me to stay- it will NEVER be something they will be able to convince me of again. As my mother and I got into the car to return to the hospital, Trachboy’s PICU nurse called to ask if I would be able to bring in a GTube extension so she might be able to feed him. She then asked me if his GTube was a Mickey and if I knew what size it was… To which I replied: “Well, although it is WRITTEN ON THE TOP OF THE TUBE, it is a 12fr-1.0”  WHO had I left in charge of my tiny child?? Although I had been told they would be able to begin feeding my underweight micro-preemie overnight, I learned on my way back in that they did not have anyone there who was able to attach a GTube extension – HUNH!?!?!?!  This was my baptism into the sisterhood of the PICU mommas.

I did not leave Trachboy’s side again while he remained in this “highly specialized” place where no one seemed to be around when they were needed, where their excuse to me was that they had “just doubled the beds while operating with the same staff”, where I did all the suctioning as my son’s oxygen levels dipped below acceptable levels or while he panted frantically waiting for someone to finally bring the morphine I asked them to get when he was beginning to show signs of pain. At one point, I unwittingly fell asleep and Trachboy’s panting woke me. He was covered in sweat, frantically kicking his feet, writhing in pain. When the nurse arrived a few minutes after I pressed the nurse call button, her first concern was his soaked bed… ??? What an experience. I learned to ask directly for what my child needs. Ask immediately for pain meds when the time is nearing that they may wear off. They moved us off the unit to a regular floor where our roommate had a family reunion in progress when we arrived from the PICU. The nurses on this floor were better than the PICU but I longed to leave the flying matchbox cars and spanish Jerry Springer as soon as possible!

The highlight of our stay was the return of the ENT fellow who asked me if I was ready to go home after one night of step-down from the PICU- I let him know that I was ready but if he thought I needed to be under the direct supervision of a doctor, I would be happy to share his living room couch with Trachboy for the night! He got our discharge paperwork in order and we rode home on medical transport. As I settled the twins into their nursery for their one night together before Round 2, I seriously wondered if I would be able to survive trying to manage him at home and her in the hospital.


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