Here’s the short story for those that don’t have much time:
On December 14th, 2000, when Sullivan was 5.5 weeks old, he stopped breathing for no apparent reason. He was resuscitated, but there was severe brain damage as a result of lack of oxygen. After a month in the hospital, he was sent home with a tracheotomy, a gastrostomy and a bag full of labels.
The original event was labeled a near miss-SIDS incident, or with the result being called anoxic encephalopathy (brain damage due to lack of oxygen). As a result of the brain damage, he had spastic quadriplegic cerebral palsy, seizure disorder, GERD, cortical blindness and loss of hearing. He had lost all of his reflexive instincts: he could not suck, swallow, cough, sneeze, blink, gag, etc. He was not given much hope of recovery. The doctors did not even think he’d live long.
He proved them wrong, to an extent. He progressed far more than they had dreamed possible, although still not far. Along the way, he fought ear infections every month until we got him ear tubes. Then he began to get pneumonia nearly every month. It felt like two steps forward, one step back for a lot of his life. He’d get sick, maybe hospitalized. All therapies would be put on hold until he was better. Then they’d start again and we’d have to regain progress we’d made before.
Still, we fought for him as long as he was willing to fight back and live. In March of 2002, he got a nasty staph pneumonia. After watching him struggle and fight in the hospital, and again when we brought him home to recover, it became obvious to us that he hated being in the hospital and that it caused him suffering. We were hunting quality of life for him, so we sought ways to keep him home and out of the hospital.
The time in Hospice was a quiet time. We still fought pneumonia, but we treated them symptomatically, rather than aggressively treating them with heavy antibiotics. There were days that his night nurse would say that she had sat all night, expecting to hear his last breath and there were other times that no one could believe he was sick enough to be in Hospice.
A time came in September, when we were at the end of our rope for so many reasons. We needed a break from his care. So we took Hospice up on their offer to give Sullivan a respite stay. It was 3-5 days in a Hospice Home, with full time care, so that we could take a break. Sullivan passed away on his last day there, October 1st.
So, sorry it’s still kind of long. How do you compress a life into just a few short sentences? Although it was a short life (23 months), it was full of much. I could write reams about Sullivan. You can check back through my blog if you want more details. There are quite a few posts in September and October about Sullivan, as there have been many days that make me think of him at this time of year.
