JACOB'S LAST DAYS

"How I will I know when Jacob's time has come?" 
"You will know, you will know", said Dr. E.

We had this conversation in 2009 when Jacob was three years old, and we thought Jacob's life was coming to an end. I have thought about our conversation throughout the years, and questioned her answer. How would I know? How would I be able to see that Jacob was nearing the end when it was the worst thing that could happen to Jacob, to our child? I wasn't sure I would know. I thought someone would have to tell me it's time to let go.

Leading up to Jacob's last weekend of life, the PICU had done a full workup of him trying to understand why he was so sick. On Friday, I was surprised the medical team had stopped his antibiotics. He was still so sick! We talked to the intern and the resident, and we didn't get any good answers. I felt as if we had an elephant in the room, and no one wanted to really talk to us. I was seemingly frustrated. After a while, the attending came in and asked if she could sit down with us. With full empathy, she said she was concerned that Jacob's sky rocking lactate was related to changes in his brain. She said she didn't take it lightly to talk about progression of Jacob's disease, but she was worried Jacob had had recent changes to his brain and that is why he was sick. Together we agreed to give Jacob the weekend to see if he would improve, and if not, we would schedule a brain MRI for the following week. I am dreading brain MRIs. With Jacob, it never meant good news. At the same time, we wanted answers. Joakim and I actually felt a little better after talking to the attending. We felt we had a plan in place.

Saturday morning, Sarah went to a babysitting class with a friend in Broomfield. I went biking with my dear friend Brittany. As we were riding up Lookout Mountain, my fit watch displayed a text message from Joakim: "Phenobarbital 62". I kept pedaling, but I knew we could not blame Jacob's sleepiness on an elevated level of Phenobarbital this time. 62 is normal for Jacob. Brittany and I stopped at the top, I told her the bad news. I told her: "I think this is it for Jacob", and tears came down my face. We hugged, had a little bit of breakfast bar, and kept pedaling. In my mind, we would do the brain MRI on Monday, and I knew we couldn't expect great news.

We took a coffee break in Morrison. I called Joakim, and he told me that Jacob had desaturated a few times on his bi-pap. The attending was in the room, and it was decided to do a chest x-ray, if he continued to dip. We were considering if we should ask to be picked up in Morrison, but Joakim told us to keep pedaling and to go home and shower.

As we got back to the car, I got another text from Joakim: "it doesn't look good". I called him, and he told me to come straight to the hospital. I knew right there in the parking lot in Wheatridge that this was it. I had no idea how to get to the hospital from where I was. My hands were shaking so badly, it took me several attempts to plug in the hospital address in my phone. As I was driving, I was talking to Joakim and telling him over and over again: "please, make sure Jacob is alive when I get there", "please have someone drive Sarah to the hospital right now". I was driving like a maniac through Denver, and my brain was racing. I was negotiating with God to please make sure I would be next to Jacob as he passed.

I parked the car right outside the hospital, and sprinted in my crocs to the glass elevator. I realized you can't run in crocs. I took off my shoes, and I have never ever ran as fast as I did through the PICU that Saturday - sweaty and in cycle gear.

Jacob was alive. The attending told me to hold his hand as the medical team was putting in a breathing tube. Joakim had made the decision to intubate Jacob, so both Sarah and I would have a chance to make it in time. I will forever be grateful to him for this decision. After ten years of fighting with Jacob, he wasn't going to be alone at his last moment.

Jacob was stable. He was breathing with the help of the breathing tube. A CT scan of his brain was ordered. Sarah made it to the hospital as I was down with Jacob for the CT scan. Joakim prepared Sarah that this was it for her brother. He was only alive because of the breathing tube. When you have to tell your child horrific news, the only way you can do it is by telling the truth. There are no other ways around it. No way to ease the pain.

Joakim and I met with the medical team as Sarah was cuddling in bed with Jacob, tears streaming down her face. The attending explained the brain CT scan was significantly worse from last year, and explained that central apnea had caused him to struggle to breathe so badly. Joakim and I didn't need a CT scan, we knew this was it for Jacob. We knew without the breathing tube, there would be no Jacob. We were completely in agreement, and as Dr. E had told us seven years earlier, we knew. We cried. We hugged. Dr. E told us to take as much time as we needed for our goodbyes and to also have close friends say goodbye.

And this is where something beautiful happened right in the PICU, for seven hours straight we had Jacob's inner circle say goodbye to him. Everyone we texted came to the hospital to say their goodbyes, and in the middle of lots of tears, the story of Jacob's life was unfolding. We laughed at memories when Jacob had been especially bossy, and at all the things our little boy accomplished in his way too short life. Love filled the hospital room and surrounded our boy. Coffee cups, ice cream, chocolate, hamburgers filled our room to make sure we had everything we needed. My dear friend Karen brought me clothes, so I could get out of my stinky bike clothes. For Sarah, this part was exhausting. She didn't know how to handle everyone's feelings, and got a little out of hand with her jokes.

We were thinking to remove the breathing tube when all our friends had left, but it was close to 9:30 pm. None of us had had time to say our goodbyes. Sarah was in big need to spend her own time with her brother, and laid with him in bed for a very long time. I then laid next to Jacob all night on my right hip holding his little hands, trying to remember every line of his face, kissing him over and over again on his little nose, and cried and cried until there was no more tears, and then cried some more. I didn't sleep all night, but it didn't matter. I knew it was our last night together.

We were all tired in the morning, but made sure we all had time to lay next to Jacob as much as we needed. Sarah took the longest to get ready to let her brother go. I knew my two children always had a special bond. To see her completely heartbroken is probably one of the hardest things I have experienced as a mom.

We were all laying in bed with Jacob as he took his last breathe. It was on Jacob's terms. He decided he didn't want a big brain MRI, and difficult decisions for us to follow. He decided when his time had come. As much as I am in pain, I admire Jacob deeply for that.

When it's your child or brother, death is not scary. Sarah absolutely refused to let go of her brother. She just wanted to hang on to him. We gave Jacob a bath together. We made sure to let him know one more time how much we loved him. We stayed with Jacob for hours. We just couldn't let him go.

We then had to pack up Jacob's hospital room for a final time. That was hard, so hard. What was even harder was walking out of the hospital without Jacob. That was the most empty, sad, and definite feeling in the world. The car ride home was not much better. The empty wheel chair in the middle of the van was staring at us.

I know we made something for dinner for Father's Day, but I honestly don't remember what we ate. We had a gift for Joakim, but it was unwrapped. Phones were constantly going off with condolences. My eyes and head were aching from too many tears. When we finally made it to bed, it was pure exhaustion that got us to fall asleep.

I never wanted Jacob to pass at Children's, and definitely not in the PICU. In the end, that is what happened, and it was nothing as I had expected it to be. It was peaceful with a medical team who had known Jacob for a decade. Dr. E was by our side the whole weekend. The room was filled with love and happy memories from Jacob's inner circle of friends. Jacob took his final breathe with Joakim, Sarah and I right next to him. It was the most sad moment I have ever experienced in my life, to loose our boy Jacob.

What happened after Jacob passed is still a little surreal to all of us. We knew Jacob was loved by so many. We just hadn't fully realized how many people's lives he had touched, and how deeply. We didn't realize how many truly had followed our journey via Jacob's blog for so many years. We are in awe by the love surrounding our boy and our family. Jacob had hundreds and hundreds of people at his memorial service and Celebration of Life. In Jacob's short life, he touched more people than most people do in a life time. Our beautiful boy Jacob.

We are in deep gratitude for Jacob's community of friends and family. Your kindness, support and love for Jacob and us are keeping us walking, one step at a time.

Much love,
Maria.