The train wreck

Nicholas recovers after surgery to widen his airway

After we came home from Sick Kids, life did not improve. Our nightmare continued, for N did not seem to be recovering. We found ourselves swinging from terror to uneasy reassurance. When we hit the fear end of the cycle, we went to the emergency room of the hospital where N had originally been a patient. We complained about noisy, laboured breathing. I was invariably asked if this was my first baby. When I told staff that it was my third, it seemed that they were puzzled, not alerted. They did not dismiss the notion that I was one of those parents who thinks their baby’s gas is a medical emergency. At each visit to the emergency department we were received without urgency. We were assigned a low priority. We waited for hours to get inhaled steroids, and then get sent home. I do not know how many times we went there, to the emergency of CVH. Maybe 5 times, maybe 8 times, over the 6 week period before disaster happened.

At the time disaster struck, N, who was now a little over 8 weeks old, had a delightful disposition, and seemed to be content: he smiled and gurgled and engaged with us, but his breathing, his breathing……omg, it was not right, it was not normal. The endless sleepless nights and constant fear blurred my ability to think clearly. What was wrong with me, that I was so filled with fear? Could I see something that professionals did not? Who was I to question the medical establishment? Maybe I was post-partum and without my full mind? Inhaled steroids, sleeping baby sent home. Hormones. Noisy breathing with infant smiles, confusion, fear, sleeplessness, back to the hospital. Over and over. What the hell was going on?

The day before disaster, I remember N was lying on the floor in the family room smiling at us, but his breathing was so loud and whistle-like, I could hear it from other rooms. Thar night he slept fitfully. He was breathing peacefully while he slept deeply but when awake he breathed with difficulty. I was terribly afraid, but I was too exhausted to take him to the emerg in the middle of the night. I needed just a few hours sleep. Just a few hours, that’s all. I slept beside him, I woke when he woke, I dozed while he slept. My decision to sleep a bit that night will always haunt me. What if I shrugged off my exhaustion that night? What if I took him where he needed to go?

In the morning there was no improvement, and I had had a few hours sleep. So I packed him up and off we went to the hospital – again! But it was too late. The train was already off the rails and there was nothing I could do to stop it. That day was noting more than a sequence of cars piling into each other.

Between the front door and the van I could hear him gasping for air in the car seat. I panicked and ran back inside, and called 911. The ambulance arrived and he was transported to our community hospital which had never seen him before and did not know his history. I pleaded with the ambulance staff to take him to CVH where he had been born, where his paediatrician was, where we had gone to the emery repeatedly, and where he had been hospitalized previously. It was roughly the same distance away, but I was refused. I was told that it was not protocol to take a patient to anywhere but the local hospital. sinking heart….I felt a dread because I knew it was the wrong thing to do. I was reassured by the ambulance staff that OT was a very good hospital. That was not my point, but there clearly was no use in arguing.

The train wreck, once underway, continued full throttle at the local emergency department. I watched helplessly as my baby boy’s distress mounted. I observed that the staff were unable to find a functioning portable oxygen monitor to determine whether he was receiving sufficient oxygen. I could see the paediatrician on call appeared overly unconcerned. I could not watch, I had to walk away. They were unable to help him, I was unable to help him. I too was sinking, and maybe nobody could help me either.

At some point my husband and i were ushered from a dim hallway into a room for grieving families. I knew that Nick was dying so I asked the hospital pastor if she could administer the last rites. We were instructed to wait in the grieving room until our son’s condition was stable. One way or the other, dead or alive, I presumed. Eventually we were allowed in the room where attempts were still being made to breathe life into him. There lay his tiny white body, naked, lifeless, on a stretcher, his chest stained with blood from repeated failed attempts at intubation. We stood at the head of the bed and closed our eyes.

In the bed adjacent to him was an dead man who passed away in the emergency earlier that morning. Death lingered in that room, and it stole across the floor towards us, towards N, with a stealthy and menacing presence. Even with our eyes closed we could feel it? And so we said goodbye, farewell, to our beautiful baby. He was gone. We lost him.

Back in the grieving room, my husband and I sat numb, exhausted and disbelieving of all that we had experienced. Not an ounce of strength remained with either of us. We sat there blankly waiting for the official pronouncement of death. Instead, at some point, somebody came in and told us, he was alive.

Someone had come up with a makeshift tracheotomy, a hole in his neck, through his airway with a plastic tube with breathing assisted by manual bagging. He was being transported, not to Sick Kids but to McMaster children’s hospital, the catchment hospital for our local hospital. I again begged for him to be sent to Sick Kids where there was important medical history. I was told this was against the rules. More train cars collided. They crashed into each other with a deafening sound, they crushed me, reduced me to rubble.

I have only blurred memories of the next 24 hours. We followed him to McMaster Children’s Hospital later that day. We were not permitted to see N when we arrived. We were put in a surgical waiting room with a few other families whose kids were having tonsils out. It was a surreal experience being with them, parents dealing with something mundane and normal, something they experienced as major, while we were trying to remain calm while awaiting news of whether or not our child was dead. I felt so out-of-place that I lost my voice in that room. The man sitting next to me asked about my child’s tonsillectomy, and I could not even reply. Instead the tears continued to flow uncontrolled down my face. The tectonic forces in my life had shifted once more and I felt a deepening sense of separation, just like i had first felt at Sick Kids just weeks ago.

I do not remember how long we waited until we heard what was going on. N was in McMasters Children’s Hospital ICU on a respirator. He survived the impossible. In the ICU that day, N had been successfully intubated using the tiniest breathing tube for the smallest of premature babies. They put him on a neuromuscular paralyzer so that he could not move, so that he would not produce mucus. Because they only had one suction cathater for that tiny size of airway tube. He looked so peaceful, there in the ICU all hooked up to life support and monitors. I felt joy, that he was at peace. I remember going home at some dark hour, to be awakened at approximately 3:00am when the phone rang. I bolted out of bed. Oh my GOD we’ve lost him, was my first thought, but McMaster had called to tell us Nick had been transported to Sick Kids. No shit? I could not feel anger, relief, anything.

We got into the car and drove to Sick Kids, I don’t know what time it was, sometime in the middle of the night, it was still dark, and when we arrived at the ICU there were parents sleeping everywhere – on couches and on the floor. We were especially unfortunate, for we were assigned a small private sleeping room with a pull out sofa bed. I guess somebody realized that we were in no condition to sleep in a lobby.. I just wanted to see N. I found him there, on the tiny bed, almost buried with tubes and wires,, breathing in time with a hissing respirator and sustained by an IV. A panel of instruments registered his every breath, and a lamp keeping him warm, although his skin was so white.

We were back in the ICU at SickKids. But finally we had an explanation: N had a stenosis of the airway, a subglottal stenosis, a rare condition. Why? Not sure. Perhaps his airway had been narrow from birth and damaged by RSV, perhaps the stenosis was caused by the initial intubation, or perhaps some combination. We will never know. If the medical folk know, then they have not told us anything. They protect themselves, they protect each other. Good for them, what is done is done.

At 3 months of age Nicholas had surgery to widen his airway at Toronto’s Hospital for Sick Children, surgery for a subglottal stenosis. We are forever grateful to the hospital staff at Sick Kids for saving his life.

After we returned home we finally saw the improvements we expected of a respiratory recovery. However I remained anxious. Neurotic mom was worried about what would happen if he caught another cold while his airway was still healing. The likelihood of a cold was high, with 2 older school-age brothers. And there was one hospitalization with a cold, at about age 1. But otherwise he did fine. I was also anxious about something more serious: for I wondered whether N was really OK? Was he damaged by the illness and treatment? Worry continued to nibble away at me. For the remainder of the first year I was the quintenssential “Hand-Washing-Purell-Toting-Mega-Germophibic” mom. I was the “germinator” who protected N from germs by keeping him off the floor and away from his brothers, aged 2 and 4. Nick was a bit behind developmentally but not significantly, nothing that could not be explained by his illness.

All seemed well until 18 months, then something happened.

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About lifewithautistickid

I am a Chartered Professional Accountant (CPA), with an MBA and BA. I have been fortunate to have had an extraordinary life with an autistic kid. I have learned so much from him about people and life in general. I want to make a difference by sharing my extraordinary experiences. Raising a son with severe autism and developmental disability has made me realize how we who are "normal" do not understand "disability". Instead of trying to "fix" people like my son by burying them in the community, I would like to see a society that respects and honors them for who they are. The potential is endless, in a world that can celebrate with sincerity, the dignity of the individual. Love and blessings to people of all "disability" . That includes you and me!
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