Everett’s Story

Son of John and April Tompkins

Everett was born completely healthy on August 27th, 2007. He was a very sweet, easy-going baby who slept and ate well. When he was eight days old he stopped eating and just wanted to sleep. He got very pale and I thought he looked blue around the lips.

After talking with an on-call nurse and having paramedics come look at him, my husband and I took him to an emergency room. In the ER a nurse put a pulse-ox on him; his oxygen level was in the seventies when it should have been in the nineties and his heart rate was very high. The ER doctor told me we needed to transport him to a different hospital. She asked me which one I wanted. I knew very little about hospitals at the time but for some reason the words just came out of my throat “Children’s”.

I think all the hospitals around are great facilities with amazing people working there, but I believe that was a pivotal moment. No one had any idea just how complicated Everett was going to be and there was only one hospital that had the resources to save his life.

A flight for life team transported him in an ambulance to Children’s hospital. When they walked in the ER with their jumpsuits that said “Flight for Life” on the back I felt like time stopped. I will never forget that moment. They were perfect with everything they did, but that was when it started to sink in just how sick Everett was.

Everett was admitted around 11 PM on September 4th. He was incubated. His heart was not functioning properly but we did not know if it was an infection, a heart defect or a virus. A crowd of nurses and doctors circled his bed and worked continuously through the night. I slept for an hour on a cot and came back. The morning shift came on and my husband and daughter came. Shortly before we were going to leave, his nurse, Beth, said they just got the lab results back and we knew what was going on. Everett had Enterovirus. At the time we thought that was good news.

During labor I had thrown up and I had a fever. I didn’t even think of myself as sick, but we stayed a couple extra days after Everett was born for observation and it seemed that everyone was fine. Now we realized that most likely I had given him this virus during birth and now it was attacking his heart and lungs.

Children’s hospital is a research hospital, which turned out to be vital for Everett. There is usually very little that you can do to a virus medically except treat the symptoms. However, there is a study being done on a drug called Pleconaril which fights the Enterovirus and Children’s is one of the hospitals across the country doing the study. We agreed to have Everett involved in the study. At this point I do not know for sure if he received the drug or a placebo; I will find out when the study is complete. Perhaps in 2010.

After Everett was admitted, he continued to decline. His situation was so complex because both his heart and lungs weren’t functioning properly and they were each aggravating the other. Both sides of his heart were failing and the blood pressure in his lungs was much, much higher than the blood pressure in the rest of his body, which made it even harder for his weak heart to push any blood through the lungs to become oxygenated. On that Friday a doctor told me that we needed to talk in a private room. She said that we may need to put Everett on the heart and lung bypass machine. If we chose to do that, Everett would go to the top of the list for a heart transplant. If we did not find a heart that matched and Everett did not improve after 15 days we would have to unplug him.

Around six o’clock that night the doctor called me. The head of cardiology was supposed to be done for the day, but after hours he took each of Everett’s echocardiograms and looked at them side by side. He called the NICU. The right side of Everett’s heart was starting to function again.

The second week Everett’s right side steadily improved, but it was doing the work of his entire heart by itself, which it was not designed to do, and no one knew how long it would be able to keep it up. Everett was having so much trouble stabilizing his oxygen and carbon dioxide levels and we were going to try a heart procedure. That week a doctor called me. His name was Jason and he was taking over as Everett’s primary physician. On the day of the procedure Jason said “I would like to try something else. Everett had about 10 doctors working on his case including neonatologists, cardiologists and pulmonary specialists. They decided to try a medicine called Flolan, which would reduce the blood pressure in his lungs. They started it on Thursday night and expected not to see any improvement for a couple days. He started to improve within hours. This medicine would not have been available, perhaps not even heard of, at any other hospital. Everett would not have made it without this medicine.

Everett was stabilizing, but the left side of his heart was still failing. After three weeks and learning not to hope for good news, one morning I told my husband that I had a feeling about today’s echocardiogram. I sat there next to the eco tech, who I had come to know well, and watched. An eco is like a sonogram of your heart and if is difficult for the untrained eye to decipher. I asked her if we were looking at the left side and she said “Yes”. I said that it looked like it was pumping. She said that a cardiologist would have to evaluate the echocardiogram, but that it looked that way to her as well. I saw Jason and called him over. Soon there were four or five doctors crowded into Everett’s tiny cubicle watching the screen. That is when we saw Everett’s heart start working again.

The next week was a big one. We were moving to the new hospital and then we were going to take Everett off the ventilator. The move was good news for us because Everett desperately needed more room. He had what one nurse called “Tree of Life” with several polls filled with ten different pumps of medicine that fed into about five different lines in his body. He had lines sewn into both legs and both arms, his belly button and his skull. He needed frequent chest x-rays and echocardiograms and it was difficult to fit the equipment in. He was extremely touchy to being moved and would drop his oxygen statistics when he had a diaper changed.

The move went very well. The crew who had brought him to the hospital the first time was selected to move him and Jason and Everett’s nurse Michelle rode in the vehicle with us. Everett was one 9News and the hospital documented our family quite a bit in their DVD commemorating the move.

The day after the move they removed the ventilator and he breathed on his own. A few days later Jason said we were going to have a meeting on Friday.

At the meeting Jason told us with red eyes that Everett’s heart had started to decline again and no one could figure out why. He said that if Monday’s eco didn’t show improvement we needed to decide if we wanted Everett to have a heart transplant. My husband called his mom in California and asked her to come out. He didn’t tell her why, but he wanted her to meet Everett before Everett died. That week I held Everett in my arms for the first time since he was sick. By this point I knew Everett and I knew that he didn’t do anything by the books. I held Everett all weekend and told his nurse Michelle that his eco was going to be great and she believed me. We were right.

Next Everett had to be weaned off some of his medicines. He had been on very high doses of narcotics for a long time and his withdrawal was awful. Thankfully he had six moms instead of one and five of them were his team of nurses who knew how to comfort him during withdrawal. He did not want to be touched or talked to. We still came every day, but kept the lights off and stayed quiet. One day his nurse Beth went to lunch and another nurse watched him. The other nurse was a great nurse but she was not familiar with the intricacies of Everett. Shortly after Beth left Everett’s heart rate started to rise. It was supposed to stay in the 140’s but it creeped up to the 150’s, 160’s. I told her we needed sugar water and we tried that, but it continued, 170’s, 180’s. Now Beth had her phone with her that alarms when a patient is alarming, but we were in the new hospital and there was a bug. Beth was sitting outside eating lunch and her phone was not alarming. When she walked in the building her phone alarmed and showed a heart rate over 220. Beth ran all the way to Everett’s room. As soon as she set foot in the room, without saying a word, his heart rate started dropping back down. I think he smelled her and on some level he knew that she knew how to help him. I asked her what would happen if his heart rate was that high. She said, “I am not going to tell you.” I said she had to tell me now. She said his weak heart beating at that rate could just stop.

All this time I took my then-three-year-old daughter, Brooke to the hospital every day. A hospital is not where a three-year-old wants to spend her days, however the people at Children’s think about this too. Brooke dressed up on Halloween and the nurses and doctors gave her candy. The hospital had a little party. She had her special friend Charlene, the NICU office manager who played games with her and brought her a Christmas present. Everett’s nurses were wonderful with her. Brooke was the only one allowed to get in Everett’s crib with him and Beth taught her to take his blood pressure, take his temperature, check his lines and she even learned how to place his leads. The kicker however, was that Jason brought his son in to have a play date with Brooke. His wife brought pizza and ate dinner with us. Jason and his family also came to my kids’ birthday parties a year later.

Everett’s heart was continuing to improve, but his lungs were not and he could not go home on Flolan. Next came another research medicine, Bosentan. This is the medicine that was Everett’s ticket home. I would have to special order it from Ohio and have it sent to my house, but it was well worth it. In another hospital, he would not have received this and he would have had to stay much longer. When we did finally go home on December 17th 2007, after three and half months, Jason brought gifts for both Brooke and Everett and a card for John and I. In the card was Jason’s home number. I told him there was no way I was going to bother him at home. He said that if Everett gets sick I can not take him to any other hospital. No one will even have heard of the medicines he is on. He said even the ER doctors at Children’s are not going to know what to do with Everett. If Everett gets sick I will need to call him.

I think you have to meet Everett to get how truly amazing he is. He just turned three. He swims underwater and pays soccer. He strikes up conversations with the checkout clerks when we go shopping. Some people would think he is just like any other three-year-old. Even when Everett’s heart started to improve the cardiologist said that it will not return to normal function since it had almost no function for three weeks. He wouldn’t be able to play like the general population. The blood pressure in Everett’s lungs, even after he was home a while was still extremely high. Everett’s last echocardiogram showed no signs of pulmonary hypertension and his heart was in normal range. During an outpatient visit I asked his cardiologist how unusual Everett is. She said she has seen children with hearts as weak as Everett’s but she has never seen an infant with a heart as weak as Everett’s was. Everett’s pediatrician told me “They are going to write papers about him if they haven’t already.” I told her what the cardiologist had said and she added there hasn’t been a baby that lived through it.

I often wonder why Everett lived and I can not say for sure. The exciting part is that it may be partly due to the medicines that were available to him and because of the research that Children’s Hospital is doing some day these medicines may be available to all babies in Everett’s situation. In the late summer, early fall of 2007, when Everett got sick, there was an outbreak of Enterovirus significant enough that the CDC wrote a report on it. I read part of the report. The babies I read about did not have the same ending that Everett did. Maybe someday the babies will.