January 26th was the most horrible day in my life and also the most amazing.
There was a part of me that knew that Drayke was no longer there as of Thursday night when he had that big seizure. His eyes were open and dilated and I could tell his spirit was just waiting for his body to give up. I prayed and begged and cried to please not to let this be happening. Not now. Not after having done so amazingly well after his trach was put in.
Monday I walked into his room and knew immediately that this was the day he was going to be leaving us.I could tell by watching the numbers on his monitor, how the saturations were slowly dropping. S, his brand new primary day nurse , who had just signed up on him the day he got sick, called Robert to let him know he needs to come in. Robert then called the room while he was in the van driving up begging me "I need to hear it from you" over and over again. I told him that it was time but he had to stay focused on driving, to calm down until he got to Vandy.
I was talking to Sherry from Parent Reach out and assorted others and was crying off & on but still somewhat calm. I had gone to the bathroom and as I came out Sherry and someone else came up to me to let me know that Robert had gotten to the hospital but had collapsed in the resource center. We went and I found Robert near inconsolable in an office. We cried together for what felt like an eternity until we decided it was time to go back to the room. Sherry, Rita, our social worker & Matt the NICU chaplain walked us to the employee elevator so we wouldnt have to deal with the general public.
Over the next couple of hours we got to hold Drayke, Robert and I taking turns. The hospital photographer was there to get pictures of Drayke for us and we should be getting a cd sometime in the future. While we were holding his some of his IV's were needing to be changed and I told the nurses not to. Let them run out on their own. Almost all of his doctors came by to say good bye. They were all in tears. Dr M & Dr G came by and told us what was going to start happening, what to expect when the end came. Dr M was beside herself. Dr P came by and was torn up. He is also the one that told us about tissue donation for research for pulmonary hypertension. Robert & I were all over that and told him absolutely, take what you need to get a cure for this. Drayke is here for a reason, this may very well be it. While Robert was holding him a gentleman from the organ donation team came by and we spent about thirty minutes going over paperwork. We later found out that his heart valves could not be used because of the strain of flu he had gotten.
Finally around 8:30 I told Robert that it was time. I could feel the end was near even though there were no monitors to tell me so. It was just a feeling. We had always told the staff that if Drayke dies I want him outside in the open air. So they jury rigged an O2 tank to his IV pole and we were preparing to go out. When we switched his vent over to the neo puffer there was a brief moment when he let out two short breaths. By the time I picked him up to go out the door his lips were already turning blue.
We walked out to the employee patio on the 4th floor and sat for a while. I looked up at Dr C and told her he was gone before we had gotten out there. She checked his heart and called the time of death at 8:55PM cst. I had her disconnect the IVs and the neo puffer. We cried and talked. S, K & K, his primary nurses were out there with us when Dr P came out. I could see in his face how torn up he was. He was crying and told us he should have done more, how amazing a little boy Drayke was and how much has already been learned from him. I told him how we have no complaints about the quality of care given to our son, everything was done plus some to keep him healthy enough to survive this long. I also told him how I have been inspried to get my nursing degree and to come work for Vanderbilt Children's. He told me that I would do great and how people like me are needed. He also told Robert & I how wonderful we were as parents. How we never failed to be with Drayke, how strong advocates for him we were.
We finally went inside and things were fairly surreal. We undressed Drayke pulled out hi g-tube & central line in his shoulder. We then gave him a nice warm bubble bath and lotioned him up in the lotion his fave nurse K gave him. While we were waiting for K to get the cart for doing prints & castings done I held Drayke in my arms the way I always wanted to, on my chest. I kept rubbing my chin on his head and was kissing him all over his face & arms. K got back and we then set about getting hand & feet prints as well as castings & hair clippings. It was almost silly, kinda like being punch drunk. We were all smiling & talking to each other & Drayke. The whole time I kept kissing and telling him how much his daddy and I love him. When we were done, we got him dressed in his outfit that Robert had gotten him, the golf shirt, knit vest & pants along with his fluffy white socks & shoes. My little man looked so handsome. We held him then let both K & K hold him for a bit. They said their goodbyes and kisses then we held him for a bit more.
The nurses told us they did not want us there when they had to take him to the morgue as they have to put him in a body bag to go downstairs, they did not want that to be our last image of him. We laid him on his bed, kissed him and told him again how much he is loved and went out of the room. We had to fight the urge to go running back to the room. Neither of us wanted to leave him but knew we had no choice.
As we were walking past the fish bowl (where the doctors hang out) Dr C came out with tears tears on her face, hugged us and told us how amazing we are as parents and reiterated what Dr Prince said about having learned so much from Drayke and us.
We got back to the Ronald McDonald House after 2AM and than is when I sent the post letting everyone know that Drayke is now in the care of the Goddess.
This was the last picture taken of Drayke while he was still alive, just moments before he passed.