Right after we came to the PICU the Palative Care Team (Rainbow team) whatever you might call them came to Ryan and I. They are a group of social workers, a Chaplin and other supporters of us. They checked on us quite a bit through our entire stay- pretty much daily. They always made sure we were taken care of and any questions were answered. They were kind of like a friend we could lean on when we needed to talk through touch decisions and had the expertise to help us come up with a decision that was right for us. Shortly after we were told Makenzie had SMARD (unofficially) they had Ryan and I come to a meeting to answer questions for us and get everything out on the table so we could figure out what to do. We went into that meeting with 2 very different ideas for what we wanted for our daughter.
Ryan knew right away that whatever decision we make was to be made solely with her in mind. What her life would be and what she would tell us she wanted if she could talk.
I couldn't think past doing anything we could to just keep her here. Keep her with us. It didn't matter what our life or her life looked like I needed her. I needed to be able to have more time. I was her Mother and as her mother I thought the best thing to do was keep her alive.
We were in that meeting for a while. Ryan was having a really hard time expressing himself because he knew I didn't feel the same as he did and was worried how I would react to him. I remember after going back and forth with several questions and discussions one of the social workers looked at Ryan and asked something along the lines of--- "You don't agree with this do you? What do you think is best" after beating around the bush and saying things like this is "okay"... I turned to look at him as his face was so sad and he finally said-- I think she is done. I don't think we should do anything more and we need to let her go.
It was a while before I said another word. The next thing I said was after a question they asked me and all I remember saying was... "I just cant say I'm okay with my daughter being dead."
They talked to us for a while longer about how we should be thinking of this and that the word "dead, dieing, death" isn't always the best. We need to focus on what we believed would happen to her after she died.
We left with a plan to spend that Saturday "trying on" our options.
We asked for no visitors.
We spent the first part of the day living our life, talking and making arrangements as if we were going to trach/vent her and the second half of the day living, talking and making arrangements as if we were going to take her off life support.
That was the most emotional day of my life.
From the beginning of the day I just knew. I knew in my heart that she was not meant to ever leave this hospital. I spent that first part of the day trying everything I could to convince myself otherwise.
Right after we got to the PICU we had started making several arrangements on how we would be able to bring home a special needs child. Our townhouse was put on the market, we had started to sell many of our items for extra money, we had looked into all different state assistance to help with all the medical costs. After we knew she would need a trach we started to talk to other families who's children had a trach. We met 2 of those families in person and I talked to 2 families on the phone. They were absolutely amazing. Some of their children had SMA, one of them had SMARD and the other had a different type of neuromuscular disorder. They gave me the best information. The best tips. They offered so much love and support. I felt like if we chose this option I would have such a beautiful support system to help us through it. We learned that the trach really isn't as scary as it seems. That we could do it. That its all very much life changing but it would also mean we would have Makenzie. We asked the good and bad. We talked about how they do simple chores or how they go on vacation.
We met with a sweet little boy who was also in the PICU who had SMA. His mom was the sweetest and really gave us great advice. It was good for me to see her beautiful son. He did not have much mobility but you could still see so much life in his eyes. I was grateful they gave me the opportunity to be apart of their families journey and to take time away from everything they are going through to help me.
That night we were pretty much 'ordered' by the Palative team to leave the hospital. For the hour shift change we ran to dinner. It was the most sickening dinner I have ever ate. I couldn't focus on Ryan and I. On the food. All I could see was people living. Living and smiling and holding babies and laughing. I remember thinking that should be us. We should be out to dinner with our baby. Not trying to decide when she might die. My sweet friend Allie was out of town and let us run over so I could take a bath in a non-public bath. We couldn't figure out how to turn on their heat to the water so I had a luke warm bath. but it was still lovely. I sat there. Not long. before we headed back to the hospital.
At the end of the night on Saturday I felt we were closer to making a decision. I actually did know but just couldn't say it yet.
I held Makenzie after Ryan left that night. I held her for the longest I had held her since we got there. I watched a movie on my friends laptop that she let us borrow and I just sat there. Wishing this wasn't our life. That we didn't have to make this decision. Wondering how I would ever possibly be happy again.
Right before I went to bed sometime after midnight I asked one of the doctors there about organ and tissue donation. I know she was surprised I asked about that since we hadn't made any decisions but it was something I feel very strongly about and wanted to know our options. Hoping that would make our choice a wee bit easier knowing we might be able to help someone else.