Shane's Story - Chapter 8

The next few months went by slowly. Shane was seen by neurologists who said that he would never get any better, but we didn't listen. We knew God had a special plan for Shane. Shane started to interact with people and show discomfort at about 7-months-old. His trach site was starting to erode and Dr. Caffy changed the brand of trach. His trach site grew worse. I went to the medical library and researched to find different brands. When I learned that trachs could be made to order and specified to fit the trach site so that the erosion would be minimal, I asked the surgeon to change the trach brand. He told me that there were only two types of trachs in the world and that we had tried them both. I knew he was lying to me. I suppose I had become an annoyance, but Shane's site was so bad that it threatened to open the main artery in his throat. When I presented Dr. Olden with illustrations from medical journals, along with manufacturers phone numbers and addresses, the surgeons avoided me for weeks. I had to leave notes for them on Shane's bed because they would only make rounds before visiting hours and all my questions were answered by other doctors. I wasn't on a quest to be right, I simply wanted to stop the pain that that type of trach must have been causing Shane. After about a month, the surgeons got tired of arguing and changed the trach brand. Shane's trach site immediately got better and healed, though he will always have a noticeable scar there.

The nurses and respiratory staff were wonderful, I went out to eat with a few of them, and Jeremy and I went out with them and double dated a few times. They were, and are, friends in every sense of the word. They took the time to try to cheer us up or distract us from Shane's problems. They bought Shane clothes and toys and spent hours playing with him, even tough he couldn't respond very well, if at all. They went beyond the call of duty, and we will always be grateful. The flight nurse, Ed, that bought Shane to the trauma center, checked in on him often, bought him a stuffed animal and a flight pin, and even gave us a tour of the helicopter. Rachel became one of Shane's three godmothers, along with my sister, Christie, and my sister-in-law, Teresa.

At eight-months-old, Shane was still on the vent but stable. We started to make plans to take him home. The Ronald McDonald House closed down for renovations and I was taken in by other families for 2 months. They let me into their homes, took me back and forth to the hospital, and treated me like family, even though they had sick children of their own. They even took me to the hospital each day.  Friends like that are rare and deeply cherished!

I contacted home health agencies in Virginia, but the surgeons refused to let Shane go back to our home because we were too far from a trauma center. Instead, they wanted Shane to go the nearest chronic care facility, 3 hours from our home. We refused and learned CPR and how to work the medical equipment. We had to go in front of the ethic's committee again. After another heated discussion, the doctors agreed to release Shane if we moved closer to the hospital. They never thought we would leave our families and move to North Carolina. I started to look for a house near the hospital and set up home health care. One of our friends gave Jeremy a job and with the help of fundraisers we put a down payment on a small house. 

The doctors still did not want to release Shane, even after everything was set up. They said that he wouldn't live to make it to the parking lot. We were determined to get him home anyway and on November 29, 1993, after 10 months, we took Shane home. We later learned that the surgeons had a money pool going over how long Shane would survive once he left the hospital. Dr. Olden bet 2 weeks, Dr. Caffy bet 24 hours. We are happy to say that they both lost.

(Side note - 20 years later, one of the surgeons came up to me at a conference and apologized, which was very appreciated.)

With home health nurses and equipment, we started on another leg of our long journey. Shane quickly settled into his nursery, with his painted cherubs looking over him from the walls. I tried my best to keep Shane's room looking like a nursery and not a hospital room, despite his ventilator, oxygen tanks, feeding pump, and monitors. We had nurses 16 hours a day and I watched him for 8 hours. 

I was only 20 years old at this time with a child at home on full life support who couldn't breathe, eat, see or hear.   And there was no help, no support group, no internet, nothing and no one to tell me what to do or what to expect.