It's Just Not Fair

On Friday morning I was looking at my little baby boy. He was in an induced paralysis and had spent the night before fighting for his life. “It’s just not fair” I thought to myself. “How did we get here?”

How did we get here? Good question. Let’s go back a few days and I’ll update you on everything that has happened to date.

Back in Edmonton last Monday (Sept. 7th) Cory’s chest tube was removed. This made him a whole lot more comfortable and he became such a happy little baby again. It was so easy to cuddle with him and play with him. We were able to put him on portable oxygen and take him for walks through the hospital. He loved going for walks and getting a change of scenery. We were told that Cory would likely be discharged on Tuesday since he was recovering so well. All of his tests were coming back great and you would never know that he had open heart surgery only three days before. Cory hated when the doctors and nurses came into the room. He would get really cranky and upset, but as soon as they left he was a totally different baby… happy and cooing and playing with Daddy and Mommy.

When I arrived at the hospital on Tuesday morning I was told that Cory didn’t have a good night. He was very agitated and didn’t get a lot of sleep. I also noticed that Cory wasn’t in his crib. Knowing Cory, I thought that maybe he had finally had enough and discharged himself. The nurse, however, informed me that Cory was getting his Cardiac Echo done because he was getting discharged that morning. They just had to make sure that his heart was functioning properly before they could release him. I was so excited! And so proud of my little guy! We got back from the Echo and the doctors came to do their rounds. It was a different set of doctors than we had been seeing over the weekend. Everything was going well, the doctors and nurses were reporting how remarkably Cory had recovered after surgery, and I was just waiting for the doctor to give us our walking papers. Instead, the doctor said that since Cory was still on oxygen he had to stay in the hospital until the end of the week. My happy, smiling face suddenly was not so happy and smiling. I looked at the doctor and informed him that we were actually supposed to be discharged today (according to the weekend doctors and Cory’s Edmonton Cardiologist). This doctor told me that sometimes on a shift change doctors have different opinions and that it was his opinion that Cory should stay. He said Cory was perfectly fine, the only problem was that Cory was on oxygen. I was sooooo angry. He told me to be patient and that we should be able to go home by Friday or Saturday. Now… anyone who knows me knows that I don’t really know the meaning of the word patient. Especially if all the other doctors told me that we’d be going home today.

This doctor came back later in the day and finally told me that Cory would be discharged on Wednesday. Yay! I was once again very happy. I was looking forward to getting home and seeing Molly, who we had left in Winnipeg with my parents. I also thought that it would do Cory good to get home and be surrounded by all his toys and people who love him instead of doctors and nurses who poke and prod him all the time. It would be much less stressful on the little guy.
So we flew home on Wednesday afternoon. On Thursday morning we went to the Heart Centre in Winnipeg so Cory could be checked out on his home turf. Everything was looking good and Cory was given the thumbs up.

Everything was going really great. Except for the “zipper” down Cory’s chest, you would never know he just had surgery. He was happy and playing and just the picture of a healthy kid.
On Sunday (Sept. 13th), I noticed that Cory wasn’t looking as pink as he was in the previous days. I met his Cardiologist at Children’s Emergency so he could examine Cory. His x-rays and Echo all looked good, but we had to put him back on oxygen. No big deal. He pinked up again and was once again as happy as a clam.

The next few days were going great. Molly and Cory were playing nicely together. Cory got excited when he got to go outside for some fresh air. And he especially loved to pet the dog. On Tuesday we headed over to the Heart Centre so we could try to wean him off of his oxygen. The Cardiologist and the nurse were both so pleased at how well Cory was recovering. We decided to reduce the amount of oxygen he was getting and go back to the Heart Centre on Friday to decide if we could discontinue the oxygen for good. That was the plan.

On Thursday (Sept. 17th) I noticed that Cory was not quite himself. I thought that maybe since he hadn’t been sleeping so well over the past couple of nights (because of the oxygen tube up his nose) that maybe it was just catching up to him. As the day went on I noticed that he wasn’t eating properly. And he wasn’t peeing properly either. And he wasn’t smiling at anything. Cory always smiles, so I knew that something was definitely wrong. We headed back to the hospital and the Heart Centre advised us to head straight to Emergency.

We were admitted right away and put in the Resuscitation Room. They increased Cory’s oxygen and things started to look a little better. They thought that maybe Cory was dehydrated and that was causing his sats to drop. They pumped him full of fluids and seemed to be happy with the results. The plan was to send Cory up to a ward over night for observation, then go home the next day. I went home to get an over night bag because I was going to stay in the hospital with Cory. I dropped Molly off at my parent’s house and finally made it back to the hospital where Lee and Cory were waiting for me.

Once I got back to the ER, Lee told me that Cory’s temperature had risen to 39.5c (103.1f) - up from 37c (98.6f) when he was admitted. I also noticed that the there was stuff oozing out of Cory’s incision where a small scab had recently fallen off. And his heart rate had accelerated to over 200 beats per minute. Nobody seemed too concerned about this and it was all chalked up to dehydration. Hmmmm…..

We were finally ready to move up to the ward. I carried Cory as the nurse accompanied us up to the fourth floor. On the way up to the fourth floor, Cory’s monitors started doing weird things. The nurse was a little stumped. Once we got to the ward (less than five minutes after leaving the ER) I set Cory on the bed. I was really concerned when I noticed that Cory’s whole body had gotten mottled. He was puffy all over and his heart was racing. His sats were dropping and Cory was crashing. Doctors and nurses came running into the room and hands were flying everywhere. Lee and I were standing in the corner watching all of this and couldn’t believe what was going on. Neither of us could understand how this could happen if Cory was just dehydrated. The respiratory therapist was bagging Cory to try to help him to breath. He put a mask over Cory’s mouth and nose and started pumping air into his lungs. I will never forget the look of terror in Cory’s eyes. I felt so helpless. The doctor told me to go stand by Cory and hold his hand to try to calm him. It didn’t help. Cory was going into shock and the doctors were doing everything they could to try to get him stabilized. As I was shuffled back to the corner, I counted 11 doctors and nurses working on Cory at one point. I can’t tell you how scary it is to see that many people trying to save your baby.

Once Cory was stabilized enough, he was moved to the PICU. Lee and I were to remain seated in the waiting room until they called for us. It was now about 9:30 at night and we were exhausted. We waited and waited and waited some more. Our Cardiologist finally came out and told us what was going on with Cory. They were trying to get a central line into him, as well as some other IV’s and tubes. They had to put a breathing tube in and were trying to get Cory to respond to medications to lower his heart rate and increase his blood pressure. We were told they were having a difficult time inserting the lines since Cory’s blood pressure was so low they couldn’t find a pulse or any veins.

We were told that Cory likely had an infection due to the surgery. We were told that the likely hood of infection after surgery was about 20% and unfortunately, Cory had the bad luck of being in that 20%. It was just dumb luck that it happened to Cory. We were told that nothing we did or didn’t do had caused this to happen. We were also told that we saved Cory’s life by getting him to the hospital when we did. I hope that those are words that you never have to hear from your doctor about your child. I knew that Cory was having trouble, but until she said those words I don’t think I really knew how much trouble he was in.

Lee and I continued to wait. Finally at about midnight we were allowed in to see our son. He was puffy, and full of wires and tubes and medications. They had given him a drug to make him forget what was happening to him. They had also given him a drug to paralyze him. Seeing him laying in that bed was far worse than seeing him after either of his surgeries. Several different doctors came and went. The Cardiologist, Infectious Diseases, Intensivists… We were bombarded with so much information and it was so overwhelming. We were told that Cory had a major internal bacterial infection. They were pumping him full of antibiotics and were trying to get his temperature down, which had now risen to 40c (104.0f). I asked the doctors on a scale of 1 to 10 (with 1 being minor and 10 being life threatening) where Cory was sitting. I like the 1 to 10 scale because it really puts thing into perspective. They told us that three hours ago Cory was a 9½ or a 10. Now… he was a 6½ or a 7. How’s that for putting things into perspective. I couldn’t believe that Lee and I had almost lost our son that night.

Lee and I finally decided to go home and get some rest at about 1:00 in the morning. There was nothing we could do for Cory, and the next day was going to be a long one meeting with all the doctors. We were told that rounds were at 9:00 and we could get a lot of information by being present. So we headed home and got about four hours of sleep. Thank God my Mom was able to keep Molly over night and all day Friday.

Lee and I arrived back at the hospital at about 8:30am on Friday morning. Friday was a long day. When Lee and I arrived in the morning, a doctor told us that Cory was doing better than the night before. “Last night he crashed. Today he is critical but stable.” I knew how serious Cory’s condition was, but to hear the doctor actually say that he crashed was what finally sent me over the edge. I excused myself from the room, called my Mom, and just sobbed. I had a really hard time getting it together after I hung up from her. After I finally pulled myself together, I went back to the room and waited for rounds to start. During rounds, we were told that they knew what type of bacteria was causing the infection, but it would be another day or so for the cultures to mature before they knew the exact bacteria. We were told that if the infection was in Cory’s bones that he would have to be on IV antibiotics for 6 to 8 weeks. During rounds I had to ask the doctors if we had to prepare ourselves to lose Cory. I cried tears of relief when they told us that death was no longer a concern for Cory.

Lee had gone out of the room at some point to call his parents and I was left alone with Cory. As I sat there I was looking at my little baby boy. He was in an induced paralysis and had spent the night before fighting for his life. “It’s just not fair” I thought to myself. I wondered how this could have happened to Cory and that it wasn’t fair that he should have to go through this after all he’s already been through in his 8½ months. But then I thought that maybe this actually is fair. Cory could have died the night before. THAT would not have been fair. At that point I had to thank God that this was only an infection that was treatable by antibiotics. I would still have my son to cuddle with and read books to and watch him grow up with his sister.

All day the doctors came in and out of Cory’s room and updated us on his condition. As each doctor came in, it was good to hear that Cory was on the right track and was very slowly getting better. During the early morning hours his temperature had gotten up to 42c (107.6f) but it was now slowly dropping back to normal. His sats were looking better and his blood pressure and pulse were also back to normal. Cory was on pain medication, under sedation, and was under induced paralysis. But he was getting better.

Lee’s parents drove in from Belmont for a quick visit with Cory. Finally, at 6:00pm Lee and I finally left the hospital. We picked up Molly from my parent’s house, and then we all went out for dinner. Molly, Lee, and I all slept very soundly that night.

So that brings us to today. This morning I spent some time with Molly at home. After I dropped her off at my parent’s house again I spent the afternoon with Cory. I was told by the doctors that he was still pretty much the same as yesterday… critical but stable. They also told me that he looked better this afternoon than he had this morning. They have decided that since there is no way to conclusively prove if the bacteria is in his bones and heart, that they are going to treat him as if it is there. Better to be safe than sorry. Cory is no longer under induced paralysis, but he is still sedated. Once they can wean him from the sedation they will be able to remove the breathing tube. Cory is currently breathing on his own but the ventilator is still inserted to help him in case he doesn’t get enough volume of air with each breath. Lee is at the hospital now with Cory and phoned to report that he is still doing well.

I want to thank everyone for their kind words, thoughts, and prayers. I can’t tell you how much it means to know that so many people care for Cory. And thanks to all my friends from Darwin School who have sent words of encouragement. It is so nice to know that even after more than 25 years has gone by we can still be there for one another.

I will try to keep you all updated on Cory’s progress. And hopefully the next posting will be a little less wordy! lol