“And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:7
This is my verse for the week. It has been a tumultuous week with Emerson. We started early Monday morning with her PA Band surgery. Many hours of just waiting to see her again, knowing when we see her she will have a large incision down her sternum. The surgery seems to be doing what the doctors had hoped, and for this we are grateful. The next event was to finally get the breathing tube out, which has been in since September 24 in Las Vegas. As you can imagine, many tests and labs are done to make sure she is fully ready for it. It’s been 24 hours, and her stats still seem to be holding steady. This also meant there was a chance for us to be able to hold her. Yes, she’s still hooked up to many monitors and IV’s, but with the tube out, there’s more freedom to move. This morning, I had 10 precious minutes with her. Enough to make my heart full again. My arms have been missing this sweet girl.
While all those are very good things, we’ve also had some difficult hours. The PA Band surgery is still a very experimental surgery in terms of children with dilated cardiomyopathy. The surgery itself has been around many years, but used for different situations. Emerson is the 6th surgery that Loma Linda has performed to treat dilated cardiomyopathy. Because the surgery is so new, and she was able to get extubated, this drops her transplant status from 1A to 1B. This came as a shock to us. Throughout the process we kept asking, “Does anything change her status?” And we were always told “No”. After all this happened, we were told her status goes down. Obviously we feel mixed emotions about this. She is still a critical patient, but with the experimental surgery and extubation, she’s been holding stable. Could this PA Band potentially reshape her heart over time and she doesn’t need a transplant? Maybe. Could she get worse and go back to 1A status? Maybe. It’s all just a waiting game right now. Wait and see how Emerson responds and shows us what she needs. We just want answers and to know what the goal is.
Emerson has also been on various opioids since this started: Fentenayl, Morphine, Dilaudid and Precedex. These were all to control pain and anxiety to keep her more sedated. In order to extubate, she couldn’t be on anything to sedate her for fear that she wouldn’t breathe on her own afterwards. They weaned her hard and fast, in less than 24 hours. To help the transition, they give her Methadone to try and counteract any withdrawal. Last night, one of her doses was skipped due to a lower heart rate. When Brandon and I came to say goodnight, we knew something was very wrong. Her eyes were rolling back in her head, she was sweating and thrashing around. She was going through a withdrawal in front of us, and all we could do was try and pat her to calm her down. The whole episode lasted about 10 minutes, and were some of the most heartbreaking 10 minutes we’ve ever encountered. Since then, she hasn’t had another episode.
How does peace fit into this whole week? In every day, every moment that we lived. I know literally thousands of people have been praying for our family. I have also spent countless hours in the throne room of Jesus, begging him for healing for my girl. And the way He’s been answering me is through peace. I have truly felt the “peace that passes all understanding” this week. There is absolutely no reason at all that I should remain calm during this time. Yet through it all, God is faithful and calming my soul in a way only He can do. Am I still scared at times for what may come? Of course. But it’s not an all-consuming fear in my daily routine because my heart and mind are guarded with His peace.
As grandparents of a 3-year-old who has been undergoing treatment for leukemia, we can relate to the feelings of helplessness that pass through your mind as you sit at Emerson’s bed side praying for a miracle. Little Colton would lay in his hospital bed and would look so small and frail. Initially, it was a job to just keep his fever down. He would be curled up in a ball with his hair matted down from perspiration, sound asleep. Eventually, with increasing doses of chemo, his hair would fall out and he was losing weight. At one point, I could only fall on my knees at his bed side and pray to our heavenly Physician to come and destroy every cancer cell in Colton’s body. It seemed like a simple task to me; and I knew that God could do it, and would do it in His time. We were convinced as a family that, whatever the outcome, Colton was in God’s hands and nothing could be better than that. It was 100% faith in our Lord that kept us in a peaceful spirit. That was a year ago. Today, Colton is on maintenance and gets his regular medications, but he has gained weight, his hair has grown back, and he loves playing out doors. We give glory to God for His many benefits. Yes, Colton still must undergo treatments, and the disease could return. But, again, whatever happens, we know that he is still with the same Heavenly Father and Savior Jesus who was there a year ago, and Who is now at Emerson’s side. Colton was at Rady’s Children’s Hospital in San Diego. Emerson is at Loma Linda. Jesus has healing privileges at both places. He will heal Emerson and provide comfort and peace to family.
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