May 20, 2010

Monday that week, Justice had an awesome day. Tuesday wasn't quite so good and Wednesday was frustrating. I didn't leave Justice's room until sometime after midnight. I got to my sleep room and absolutely could not sleep. I remember looking at a friend's blog on the laptop another friend had loaned me, and laughing at the video of her 18-month old throwing away all the veggies in the cupboard. Then it made me cry because I started thinking about how the muscle relaxers Justice was on would set him back yet again. 20-months old and my little man still couldn't walk. His physical therapist said he had everything he needed to walk, but he was just scared. Figures, the little squirt was fearless when it came to climbing, but he was afraid to walk. And now another set back. At one point I almost headed back to the PICU. I finally fell asleep around 4 a.m.

I was up at my usual time around 8. Skipped breakfast and headed back to the PICU. I laughed quite a bit watching some shows on Hulu that morning. I wondered if Bubba's nurse thought I was crazy in there laughing by myself. During rounds, one of the docs said I was "the most Zen parent" they had because I was always calm and took everything in stride. I told them it was outward only. Nothing new was decided during rounds. Justice was still a mystery.

Later, one of the docs came in to talk to me. When we chose to have Justice transferred to Denver a week and a half earlier, we knew the PICU said he wasn't likely a candidate for ECMO again. But we chose to transfer him anyway because of the access to specialists, specifically pulmonologists. Now the doc was telling me that they had reviewed Justice's chart from his stay 4 months earlier and discovered that the cardiologist had been able to repair the blood vessels in his neck when he was taken off ECMO. Because of that, he was a candidate for ECMO again. They were looking into a different type of ECMO that they didn't have all the equipment for on hand. But it was ok because we weren't at the point of him needing it. They were looking into it just in case.

I went to lunch, called Jake and filled him in on the latest. I got back to Justice's room and messed around on the computer some more. After her lunch, the nurse asked me if I wanted to help her give Justice a bath. I, of course, said yes. I got all gowned up and the nurse changed his diaper. Then his sats dropped to the mid 70s.

I backed off as the respiratory therapist came in and made adjustments to the vent. It didn't help. His sats were in the 50s by now. Tons of doctors flooded the room, both PICU attendings, fellows, and residents. They would bag him and his sats would come back up to the upper 70s/low 80s. So they'd reconnect the vent and he'd drop back to the 50s.

Terms were being thrown around that you only hear on medical dramas. At one point his sats dropped all the way to 17 and his heartrate started to plummet. His heartrate came back up on its own and they got his sats back to the 70s. But every time they stopped bagging him and put him on the vent, his sats would drop again.

I have no idea how much time had passed from the start of this. But finally, the head of the PICU came over and knelt down next to me. He told me that Justice's sats had been too low for too long and there was no way his other organs weren't being affected by the lack of oxygen. He was too unstable to put on ECMO at that point even if they had had the equipment on hand. He said they needed to stop and suggested that I hold him. He said they couldn't keep him going long enough for Jake to get there from the Springs. But I knew I needed to at least let Jake know before I let Justice go. Dr. C offered to call Jake.

Jake didn't answer. I knew why. The ringer on his phone didn't work. Plus, I knew his phone was probably downstairs charging and he was probably upstairs. I just couldn't see calling Jake after the fact, so they kept working on Justice, while I kept trying Jake and praying for a miracle. Finally, I remembered I had the neighbors' number. So I called them and asked if they would please run across the street and have Jake call me.

2 minutes later he did. I could barely talk thru my sobs as I told him the doctor needed to talk to him. Dr. C told him what was going on, told him to head that way but to take his time and be safe, maybe get a friend to drive him, because there was no way they could keep Justice alive long enough for him to make it the hour and a half up there. He gave me back the phone and Jake said he was loading the girls in the car and there was no way he could wait for someone else to get there up drive him. He said he was sorry he wasn't there, but I knew he had to be home and working. Besides, we never really thought it would come to this.

I got off the phone, and they moved my chair closer to Justice's bed. One of the fellows brought in an oxygen tank, but Dr. C waved it away. They disconnected the vent and handed me my baby. They drew the curtains, everyone left and shut the door.

I became the least Zen parent in the PICU at that point. I wasn't crying. I was wailing. That's the only word to describe it. I remember thinking "I should be more composed than this. I should be gently encouraging him to let go. I should be telling him that I love him." But I just threw my head back and wailed some more. I had my hand on his chest. He only took occasional breaths but his heart was beating away, strong as ever. At one point he looked like he might try to open his eyes. I'm so glad he didn't. I don't think I would have been able to stand it. Two of his primary nurses from his Christmas stay, who we loved very much, came in and sat with me. It can't have even been 10 minutes from the time they placed him in my arms when I realized I couldn't feel his heart beating anymore.

A few minutes later one of the doctors came in and confirmed it. The nurses went back to their patients and the doc offered to sit with us for a while. I sent a text out to friends and family simply saying "he's gone." Then I called Jake. He hadn't told the girls what was going on because he wanted us to tell them together. But Dakota knew something was up. She leaned forward and placed her hand on Jake's shoulder. Jake said 2 of our pastors were also on the way.

The doc continued to sit with me and even held Justice for a couple minutes so I could use the restroom. She eventually had to leave but Justice's nurse was still there for whatever I might need. I asked her if it would be possible to get the girls some dinner even though food wasn't typically allowed in the PICU. She said of course.

My sister called and said my best friend wanted to know if she should come now or later. My mom said she, my dad, and my sisters would be on the first plane in the morning. I honestly couldn't figure out for a few minutes why everyone was suddenly coming. Then it hit me, we were going to have a funeral.

A volunteer came in at some point and made a plaster cast of one of his hands and one foot. She gave me three matching Teddy bears. One for each of my kids. The girls call them their Justice bears and the third sits on top of his urn wearing his hospital bracelet.

Jake and the girls finally arrived. We gathered the girls close and told them that Bubba had gone to live with Jesus. That he wasn't sick anymore, and he would never need another oxygen tube again.

The nurse brought the girls dinner and they ate and watched a movie while Jake and I bathed Justice. I gave him a mohawk.

Shift change rolled around. We got a new nurse. Our pastors arrived. We talked to the hospital social worker. My sister called and said my best friend couldn't wait anymore. She and her daughter were in the car making the 9 hour drive to get to us. Jake's sister called and said their mom was already on a plane and that she and her family would be driving out in the morning.

We made some preliminary memorial service arrangements with our pastors. They were a huge help making calls and finding a funeral home. They left and took Jake's car with them so we could all ride home together.

I'm not sure what time we would have left the hospital if it hadn't been for the fact that we needed to pick up Jake's mom at the airport. I could have lingered there forever, I think, so it's good we had something we needed to do.

I only had one request for the nurse before we left. I wanted Justice's body removed from the room before we left. I couldn't stand idea of walking out of that room and leaving him behind. She wrapped him in a blanket and placed him in a wagon. Georgia kissed him and said goodbye. Dakota didn't want to, and we didn't make her. The nurse and a security guard took the wagon out.

And we left the hospital without our green-eyed miracle boy.