When Shane was 15-months-old, a new nurse, Ana*, after undergoing training, was working a night shift. At 6 am, she lightly tapped on our bedroom door and asked me to come to Shane's room. As I got halfway there, I heard Ana screaming. I ran into Shane's room and looked at my baby. He was blue, his eyes were open, but they were rolled into the back of his head. I screamed for Jeremy. He came in, saw Shane, and ran to call 911. Ana was screaming and shaking Shane. He was still on the ventilator, she hadn't even started CPR. I had to push Ana out of the way, and thankfully, everything I learned about CPR came back to me. I took Shane off of the vent, hooked up the ambu bag to his trach, yelled to Ana to turn up his oxygen, and checked Shane's pulse. His heart had stopped. I started CPR and finally Ana regained control and helped. Jeremy came into the room and told us an ambulance was on the way. He started to check the ventilator, which had been alarming since I first came into the room. Ana had emptied the humidification trap to release the collected vapor and forgotten to close it. The ventilator must have been alarming for at least ten minutes. The first thing we learned in our training was that if the ventilator alarms and you don't know why, you take the patient off of the ventilator and manually respirate them until you fix the problem. Ana had left Shane on the vent. Imagine trying to breath through a very small straw that had no oxygen. That's how Shane felt. I fired her on the spot. After 10 minutes of CPR, Shane started to come back. By the time the ambulance got there, he was fine. Of course we took him to the hospital anyway, and he was released the same day. Ana was never disciplined by the company or the state nursing board. I may or may not have threatened to kill her with my bare hands once Shane was stable and before we left for the hospital. We became more cautious about the nurses we let take care of Shane, in fact, we were probably neurotic about new nurses.
We switched Shane's surgical care to another hospital when we bought him home at 10 months. We were blessed to lived near 2 children's hospitals capable of handling CDH. At a routine check-up, an x-ray showed that his sutures were giving way and that he would need another surgery. By now Shane was off oxygen, and only on the vent at night. He was interacting with us, starting to roll, and his smile lit up a room. In August of 1994, Shane underwent his 3rd major surgery. Everything went as planned and two weeks later he was home.
That October, Shane was doing great and I got to make him a Halloween costume. He and his 3 cousins were firemen and Dalmatians and his stroller was converted into a fire engine. Thanksgiving came and we got to go to Jeremy's family's house to celebrate. At Christmas, we went back to Virginia and I got to do all the things that I had wished for during the Christmas I was pregnant. Jeremy even played Santa Clause. Shane now played with his toys, rolled around in the wrapping paper, and could go from room to room without equipment and tubes. It's amazing what parents of healthy babies take for granted. The first time I could actually walk Shane around was like magic. It was like Shane and I were dancing in our own little world and he was almost "normal".
Shane turned 2-years-old in January of 1995. His cake this year was a hypo-allergenic, applesauce cake. His cherubs have been removed from his walls and replaced with more "boyish" pictures of Looney Tunes characters. Shane came off his vent that May.
Eating was big issue then. At 2 he still wasn't eating by mouth. His oral aversions were awful. He wouldn't allow anything in or near his mouth at all that resembled food. Books, toys, matchbox cars were fine. Anything cold, hot or wet or with specific textures made his gag awfully. With all his many other issues and a trach, eating wasn't on the top of our list. He had a feeding tube, then a G-Tube, then a Mic-Key button. Feeds were ever changing based on how his stomach and diaphragm were doing. Sometimes continuous, sometimes bolus. We never left the house without feeding bags, feeding pump, emergency button in case his came out, prescription formula thanks to his allergies. It was our normal. Not eating was a really big deal because he was very underweight and he needed extra calories to make up for all the calories he was using just to breathe.
We still had home health nurses but not every day. He was still getting visits at home from social workers, physical therapists, occupational therapists, speech therapists and sight therapists. He got glasses. We started working on teaching him sign language along with trying to get him to talk with the help of a pacimuer valve over his trach. He heard his voice for the first time. We heard his voice for the first time! Laughing, cooing, crying.... it all sounded like the most beautiful music we'd ever heard.
On the 4th of July, he went into respiratory distress and we went to the emergency room. He had emergency surgery, his 4th repair, and went home 2 and half weeks later, off oxygen. Just like that. No warnings, no symptoms like before.
Then that October (1995), he needed yet another surgery, this time with symptoms so we had a small bit of warning. He went through surgery number 5 and came home after 5 days. We made frequent trips back and forth to the hospital for viruses and for appointments to all the many specialists involved in Shane's care. We didn't know when and if Shane would need another surgery. He never did anything by the book.
Yet another Christmas came and I hoped against hope that we could possibly receive another miracle. I prayed nightly that God would heal Shane and prevent him from suffering through more surgeries. In early December, we went for a routine check-up with Shane's surgeon and an x-ray was taken. I have learned how to read these x-rays and was scared when I saw a mass. It wasn't a tumor. The doctor's said it was scar tissue, but Jeremy and I said it is the touch of God because whatever it is, it's holding his organs straight and as long as that happened, he didn't need another surgery. He gave us yet another miracle and I believed that Shane would not need future surgeries. I was so wrong.