Not a Good Friday

Oliver has been struggling much of the week with a virus but seemed to be coming out of it okay. We hooked up a Bipap Wednesday to help his lungs stay open because he was having so much difficulty breathing out. Friday morning around 3 am his oxygen saturations started to drop and I could not figure out why they were dropping and his respirations were going up. He was working really hard to breathe. By six a.m. I finally realized a tiny piece of the Bipap tubing that delivers the oxygen was broken. I felt horrible that I did not find it sooner. I quickly fixed the tubing but his oxygen sats did not go back up, rather they went down. We made some adjustments throughout the day Friday but he was crashing fast and it was scary. The evening nurse noticed that his right lung was very quiet sounding, we were wondering if it had collapsed. His sats were far below 60, they should be 100 percent. John and I made the decision to go in to the hospital. We had said we were not going to do this but when the time comes and your little one is struggling you want to do everything. Another ambulance ride to Childrens. They were very sensitive to the fact that he was hospice and careful not to do any interventions without talking to us. His O2 sats were 50, 40, 30, and even lower at some points. Right after John and our nurse left for home, Oliver stopped breathing. Our plan all along was to not bag Oli and let him go. I was alone and I was scared so we bagged him. I did not want to make that final decision without John. We had two choices at this point. Oliver was, in the opinion of the doctor, not going to make it through the night and he wanted to know where we wanted Oli to pass. We had the option to put Oli on a vent, also not in the plan. We were so tired that John and I both felt that we should have him on the ventilator Friday night and bring him home, off of it, on Saturday and probably let him go today. We were so tired and drained that we just needed sleep. We slept close by down the hall in the sleep rooms and the PICU nurses who are the best of the best took great care of our boy. We went to Oli's room this morning to turn his vent off and go home with him. Oli was completely unresponsive last night so we thought that Oliver had already left us. We said Good morning Oli. He opened his eyes, smiled, and grabbed our hands. So guess what? We came home on a vent and now really don't know what is going to happen. He is doing okay but still has low sats even though he has a ventilator. Doctors are sure this is a sign of his neurologic decline. I just follow Oli's lead. He has pnemonia, in his x-ray his right lung was completely filled and they also found some bacteria in his blood. We don't know what to do anymore and I know as a nurse what decision I should probably make but as a mother I want to hold on to every last second and John feels the same--especially when he's responsive. I talked to Adina about it today and explained the vent to her. She said, "Mommy, I think it is time that Oli goes to Heaven. Then he can walk and run." I wish I had her courage and wisdom but we just couldn't let him go, especially when he flashes that smile.
We are home now and we are going to have a quiet family Easter together. We have nurses but we do not want to be far away from home and Oli wants to be part of our party. I am glad that I know he has pnemonia. I was sure that I caused this episode by not catching the broken tubing right away, I would have blamed myself for a lifetime.
Oliver gets very sick very easily from the slightest cold. We love having visitors and don't want anybody to stay away. Regardless of what anybody says we do not want anybody to stay away. There have been times where we have limited visitors like when Cora was a baby and other times but it is not because we don't want to see people but because Oli was very sick at the time and we can't bring more germs in the house. If we need privacy we put notes up on the door. If you are sick or have been around sick family, just wait a week. Hope you all have a happy and restful Easter. I am hoping that ours is Happy more than Friday was Good.