Testimony - Chapter 3

Nicholas got very sick with a cold the last week of October. I had an appointment for him with the pediatrician on the morning of the 31st because over the last few days he also hadn't been eating as much as he should. His breathing was checked and plans were made for follow up with a feeding specialist. That day was also Sabrina's 5th birthday. Since Nicholas was sick, friends of ours graciously agreed to take her trick 'o' treating with their children. That night was difficult though - Nick was too uncomfortable to sleep on his own, so he slept with me right on my chest.

The next day he seemed better, and I was encouraged. He had overcome a cold on his own not long after he was diagnosed, and I hoped he could do it again. But Thursday night was an ordeal. He could not get comfortable and by 3:00am I didn't think he could cope on his own anymore. I seriously considered calling 911 because I didn't know if he would die in his car seat on the way to the hospital, but I didn't want to wake up the neighborhood and scare Sabrina. So I drove and I prayed all the way there.

I've never been to an emergency room and went right in before. Nicholas was very sick. They put him on oxygen, took blood tests and X-rays, and I was relieved he was surrounded by people who could help him. We spent a couple of quiet hours in emergency and then were taken up to the Pediatric Special Care Unit (PSCU). I relaxed in the chair and tried to get some rest. I was woken up at about 8:00am when Nicholas crashed. They started to bag him to keep him breathing, took another chest X-ray, was seen by almost every resident in the hospital, and then he was sent to the Pediatric Intensive Care Unit (PICU) with suspected pneumonia. That was to be the first time of many I would see my son on the brink of death. I think it takes a piece of you every time.

They managed to stabilize him in PICU with positive pressure breathing support. During this time, Corrie and I were pulled into a meeting room with a team of doctors to discuss his "advance care directive'. That means a DNR (Do Not Resuscitate) for those who watch hospital shows on TV. I think that was the first time we were faced with the reality of the disease Nicholas had. How do you answer questions about how far they should go to keep your child alive? We cried out to God for wisdom, because He should be making these decisions, not us. We knew that invasive techniques were not the right thing for our family, agreed that no heroic measures should be taken, and went back to the bedside of our son. He was stable long enough for me to go home for a rest. However, we got a call early Saturday morning and I went back to the hospital. His right lung had collapsed completely and they had to increase his breathing support.

After that he remained stable long enough for more aggressive measures on Monday. They increased his chest physiotherapy, added a cough assist machine and frequent suctioning to his care plan, and put him on very sensitive BiPAP positive pressure breathing support. By Thursday, the doctors determined that his lung had been reinflated. We defined our new goals to be to wean him off of supplemental oxygen (getting him to "room air") and to wean him off of high-pressure continual support. By the next Tuesday, after 12 days in PICU, he was determined stable enough to be under the care of the PSCU. That was November 13. Our days in PSCU were good. Nicholas was loved and he and our whole family were really cared for by the staff there. We were making steady progress and talking about preparing for "when Nicholas goes home". I was confident enough in his care to go home at night to see the girls and sleep in my own bed.

Either Nicholas caught a cold, or he was at the end of his strength, but on November 25 he started to quickly decline. I remember the date well, because Corrie & I were at the Cargill Festive Party and I got a phone call there that Nicholas had shown some problems, but was stable. When we got home, I called again and he was sleeping OK. Why do kids always get sick in the middle of the night? I woke up around 3:00 and felt the need to phone again, and the nurse told me she was just about to call. Nicholas needed me, he wasn't doing well.

I drove to the hospital for what seemed like the millionth time, cranking up the music really loud and shrieking at God that this was not fair and I didn't want to do this anymore. However, by the time I got there, I was focused on Nicholas again and ready to submit to what God wanted for him. I faced a long night of walking with Nick through the valley of the shadow of death. He was so fragile - if they took the BiPAP mask off he would immediately decline and they would have to bag him and give him oxygen. Somehow he stabilized again the next day, and I spent Sunday night by his side. I was so grateful that Corrie could be with Sabrina during this time. We worked together as a team for our children.

Monday morning Corrie and I found ourselves once again in a meeting room with a team of medical professionals. They told us that there was nothing more they could do for Nicholas, and asked us what we wanted to do. Asked us!!! What did we know? We all decided on giving him another 24 hours and see how he did, because we just couldn't make a decision at that point. Monday night I called Corrie to the hospital because we had a long episode of trying to keep Nicholas going and of course we wanted to make sure Cor was there if Nick died. Again, he stabilized, and we faced another meeting Tuesday morning. We decided that Nicholas had fought long and hard and he was just too tired to keep on going. We decided to remove all life support. How does a parent make that decision? When we went back to his room, he was so pale, so still, and looked exhausted. We knew we had to let him go.

The medical team removed all the machines in the afternoon and gave him some medications so he would feel comfortable and not anxious. It was so wonderful to see his face without that hateful mask on it. With the amount of dramatic declines he had experienced over the last couple of days we expected Nicholas to pass away quickly, but his little heart was strong. We had three beautiful hours with him, holding him, talking to him, rocking him, singing to him. He grew paler and paler until he opened his eyes and smiled. He breathed his last breath in my arms at 5:00 in the afternoon of November 27, 2007.