Gosh, I really don't know what to say today. Ellie has had a horrible night/day. We are not sure what has caused this turn. I don't even know what to write so if I am rambling I am sorry. Ellie continued to have periods last night almost every hour starting at 1 in the morning of not being able to oxygenate. Around 5 am she just took a turn that she couldn't come back up. She got hand bagged 4 times during that period. The doctors decided during this time to put her back on the paralytic she had been on for a month. They also decided to put her on a different ventilation mode. They first gave Ellie a dose of the paralytic just to calm her. She had been so upset and so stressed she just could not relax. This first dose helped to relax her. We did get to see her eyes for a little while then. She was awake and just looking at us. It was sweet and sad all at the same time. To know your child is about to be put on a continuous paralytic drip that will make her look asleep all the time is hard. Especially when we had such a wonderful week with her. They then started her on the continuous paralytic drip and we slowly began to see her drift off to sleep. Ellie has seemed comfortable since then. But, there are other factors going on. Right now they are able to oxygenate her, but not ventilate her. This means she is retaining carbon dioxide. A normal blood gas reading as they call it for her is in the 50-60s. Her last one was 112. I cannot stress enough that this cannot continue, if it does it will be fatal for our Ellie. I hate saying that. I have said all along this day that this just sucks. It just sucks guys. Matt and I are upset but still hopeful. Ellie is a strong little girl we have seen that time and time over. I am not sure when I will be able to blog again. I will do my best, but I know you all understand that Ellie comes first. Please just pray, please just pray.
I will leave you with this, because I have thought of this all day. We don't know what the future holds, but we know the one who holds the future. I am clinging to that and trusting in God to get us through this.
Love,
Ellie's Mommy
