Dylan's story

My heart is full, but broken at the same time, if that makes any sense. I've been trying for weeks to bring myself to write this post. Partly so I'll have a record but to let those that want to know "what happened" know as much as we do.

So let me start at the beginning. Dylan was born in July 2003. He was a huge baby, weighing 10lbs 6ozs and 22 inches long. He spent the first week of life in the NICU. That was hard. Little did I know that it would be way harder at the end of his life. Dylan didn't come with an instruction manual. The book, "What to expect", was thrown out the window. We would learn as we went. Our family was blessed with a great team for Dylan. We eventually got a great neurologist. Dylan's infant team, helped in so many ways. We met a lot of other "special needs" families. It was nice to not feel so alone. We tried school for Dylan when he turned 3 and he hated it. Till this day I still don't know why. I guess I shouldn't say he hated it, he just had a really hard time. When he turned 4, we decided to give a Home Hospital program a try. We struck out with the first two teachers the school district sent, but we found Dylan's awesome teacher and have loved her ever since. (As I type this, she is finishing a project with Brianna that she had started with Dylan 2 days before he died) The past few years have been awesome with the great therapists that have come to our home and helped Dylan and me as well. I am so grateful for those relationships.

So fast forward to Thursday, May 27th. It was like any other day. Dylan was happy so that meant we were happy. We had his teacher coming at 4 pm, Brianna's open house at the school she'll be attending in the fall, and laundry to put away. Dylan hung out with our friend Erika that evening while we went to the school. When we came home we hung out and then put laundry away. You are probably wondering why I keep talking about laundry. I absolutely HATE putting away laundry so Kalen helped me put it away. We could hear Dylan "chilling" in his room, in his favorite place, his bed. He then had the biggest poop known to man. Dylan thought it was the funniest thing ever. He LAUGHED for 45 minutes. I am so grateful for those 45 minutes. That is our last happy memory of Dylan. If you didn't know him, he had the best laugh and smile.

So what happened? The coroner put on the death certificate Asphyxia, Seizures, Cerebral Palsy. For us it still doesn't answer the question. On Friday morning, May 28th, I got up with him around 4am. It was like any other night, I went in to adjust him on his pillow, help with his reflux and turn on his "music", he loved his Fisher Price aquarium that played music. Then headed back to bed. Kalen got up with him around 6am, he helped Dylan with his allergies and Dylan was so happy. Kalen also "adjusted" him on his pillow and turned on his music. Gave him an extra squeeze, Dylan smiled and Kalen left the room. Due to the upcoming Memorial day holiday, Kalen was planning on going into work early so he could get off early. I'm so glad that he didn't. He went in later than he wanted. On his way out, he checked on Dylan and knew something was wrong. He screamed to me, telling me something was wrong with Dylan. I jumped out of bed and went running into his room. We started CPR and called 911. Brianna who was standing in the hallway, telling us to calm down and take deep breaths, saw her parents performing CPR on her brother and were stressing out. Brianna still asks us why Dylan was so blue. She saw a lot. We are trying to get her into therapy so she can work out her feelings.
There were so many paramedics and cops at our house. It was very chaotic. Very little info was given to us. I didn't see a heartbeat on monitor when they wheeled him out. I vaguely remember saying the words over and over,"this is not happening, this is soooooo not happening". I was shaking so badly and felt so nauseated. I also kept thinking cops don't come to our house, why are they here and why are there so many of them. I did know from our friends daughter who died 2 years ago that cops would be coming to the house if a 911 call went into claiming a child died. I mean I've called 911 before when Dylan had seizures but this was nothing like before.

After a lot of waiting, the Fire Department Chaplain came and we followed after him to UCD Medical Center. I had already called 2 friends to let them know Dylan died, but we arrived, the social worker told us that there were a lot of people "working" on him. The paramedics were able to get him breathing but he was on a respirator and got his heart started moderately fast. Kalen and I didn't know what to think. There was a little bit of hope, but it didn't look good. Nothing like this had ever happened to Dylan so we didn't know what to expect.

Dylan stayed in the ER for awhile and was eventually moved up to the PICU. He had a fabulous team for medical care. I still play words with friends with one of the nurses on my phone. Although it was the worst thing that had ever happened to our family, we are so grateful to those that helped try to save our Dylan. We will be eternally grateful for them.

Having Dylan in the PICU allowed family and friends come show love and support and say our good byes. It was extremely difficult, but I am so glad that everyone that came got to see him and say their "goodbyes". Family members slept in the most uncomfortable situations. Floors, chairs, and some didn't sleep at all. We are so blessed to have such a great family.

On Saturday, May 29th, Kalen and I had to make the toughest decision of our lives. We were told after 3 neurological assessments that Dylan had severe brain damage and that we had to decide what we were going to do. How do you "choose" to stop helping your child? It was so hard. Our hearts were saying one thing while our minds were telling us another. At 7:37 am, Dylan was pronounced legally brain dead. I fell to the floor and wanted to throw up. I wanted more than anything to have the situation be the worst nightmare I ever had. But it wasn't. We were surrounded by loved ones, our pediatrician(I'll have to share why we were so lucky to have him there in another post), friends, medical staff that cared for him all night and could have gone home when their shift ended, and family.

We got to spend the next few hours holding our son's body. It was the worst feeling leaving the hospital without Dylan.

We are trying to make our way through what the new "normal" is for our family. Thank you to all who came to the hospital, have brought dinner, watched Brianna, cleaned my floors, washed dishes, helped plan the funeral, participated in the funeral, have sent cards, came for visits, made countless batches of cookies, sent flowers, brought Dylan flowers, phone calls, hugs, smiles, warm thoughts, have said prayers for us and our family, to those who have lent an ear, and a shoulder to cry on. (And played words with friends with me so my mind stays busy)

Here's some photos from those crazy, insane, horrible, and painful days...............