The Worst Kind of Wake Up Call

After a long emotional day, I sent Roger to the Ronald McDonald house to get some rest. I'd stay with Travis until 5am and then we'd switch off. We had two nurses that night (two are needed to run the ECMO circuit). One of them was a nurse Travis had in the NICU. Loved her. The other was a complete jerk to me. She barely said one word to me the whole night. She didn't offer me a blanket, didn't offer me water, didn't try to small talk....nothing. I held Travis' had with my right hand all night and played on my computer with my left. I remember watching episodes of Tough Love on HULU. I was so tired but couldn't bare to leave that room. I honestly thought that even though Travis coded and looked terrible, he'd pull through. I knew a lot of storied about kids on ECMO that came off. That was my hope. We just had to wait it out until the next day when they'd run tests. Roger got there at 5. Before I left, I told the grumpy nurse how I felt. I told her that even though Travis was the patient, she could have been a little more caring towards us. I told her that after a super horrible day that last thing I needed was a bitchy nurse.

I left and walked wearily across the street to our room. My head hit the pillow and I was out. I had been asleep for maybe 20 minutes when I got the call.

Roger said to get over there right away. He couldn't even really talk. I just remember him saying his eyes weren't responding to light. They were transporting him to CT scan with the ECMO circuit (which is a HUGE deal). I jumped out of bed and rushed back over. We waited as a huge team of people came for transport. They closed the unit down. It's not easy to move someone on life support. I remember waiting in the hall as the scan took place and walking back behind this parade of people. Other families and patients watching us with fear. Full of fear ourselves.

It would take several hours later for the neurologist to come and give the report. They brought us back into the conference room we were in the day before. Dr. Lamberti and the ICU doctor told us the worst news one could ever hear. There was too much damage to his brain. IT was swelling and they did not see anything the could do. We had to say goodbye. The next few hours were spent talking to people. Social workers, transplant people (we wanted to donate his organs), doctors, our families that came to say goodbye. The social worker brought in a box of memory makers. We took fingerprints and cut some of his sweet hair off. We took pictures. I asked to hold him. They said okay but looked fearful. In order to transplant his viable organs, he had to remain on the ECMO circuit until harvesting. And, the ECMO circuit was quite specific with placement. One wrong move and it could mess things up. The nice nurse from the day before was determined. We let Roger go first. He sat in a chair by the bed and held Travis briefly. It wasn't the snuggle we wanted. It was holding our sweet boy with tubes and wires and machines with just our arms straight out. Then, it was my turn. I sat down and they worked hard to get him transferred to me. Once things were set they set him down and alarms started beeping....they had to reposition him and couldn't get it right until he was flat back in bed. I gave up my last chance to hold my baby so that his organs could help someone else.

Late that evening we said our goodbyes and left. We left with him still on the machine and the transplant team working hard to find matches. We went home. To an emptier home.

I remember just feeling so tired and numb. I remember hoping that his organs would be a match and that someday we could meet the person who they went to and tell them about our miracle baby. I remember hugging Addie Sue....so much pain I felt for her. She was so young and never really got to know her brother. I remember worrying about my mom and my sister. If they were okay. And, I remember falling asleep praying it was all a nightmare.

....continued tomorrow.......