Busy week!!

I wanted to give a little update since it's been a little while since I've posted anything. Things have been so busy and hectic this last week. I had to go to work on Monday and it was so nice to see everyone again after being gone for so long but I had a really hard time with it. Eric was here with Caydence and was starting the training with the trach, he did his first trach change. The whole time I was at work I couldn't stop thinking about how I should be there with him learning how to care for our daughter and also just thinking about everything that is going on. It was pretty hard to really concentrate on work when my head is obviously somewhere else. After working that one day I knew I wasn't going to be able to handle working and only being here on my days off so I ended up going to my doctor and he took me off work. I know that my job will most likely be gone when I am able to come back but really what am I supposed to do. I just hope that something will be there for me when the time comes. As soon as I got back here the training started for me. I did my first trach change with Eric being my assistant and it went really well. Eric gave me a bunch of pointers beforehand since he had already done it once and I just kept telling myself not to be nervous and to just do it. We both feel pretty confident with doing it, we are a really good team. All of this has shown us that we really need each other to be able to do this. I am so thankful that Eric is so confident and has the attitude that we can do anything because he makes me confident too. We have also started meeting with people and getting things set up to go home. The original plan was to go to CRC before going home, but we decided that we really don't want to go there and our doctor has agreed to keep us here until we are able to go home. This hospital doesn't normally send kids on ventilators home from here, they always send them to CRC first. So doing this is totally new and challenging for them. We are really making everyone work super hard to make this happen. Our case manager Lupe is amazing for getting in touch with all the right people and really trying to make this happen. We met with the home nursing agency Maxim the other day and discussed our needs. The medical teams here were trying to push that we have 24 hour nursing to go home but we stepped in and said that we refuse to have 24 hours. We finally agreed that we will have 16 hours a day Monday through Friday, and 8 hours a day on Saturday and Sunday. So the agency is working on getting some nurses hired for us and hopefully it will happen soon. Today the rep from the company that will be handling the vent and all the supplies came by to find out what all we will need and on Monday we should have the vent that she will be going home with. Also on Monday we will be meeting with a company that will be making Caydence a special stroller/chair that will help carry her vent and everything that we have to lug around with her. I can't believe how much goes into getting us home. I am so thankful for everyone that is working so hard to make this work for us. Everything actually seems to be falling into place, we just have to get the nursing lined up and we should be able to get out of here soon. We met with a really great family this evening that has a daughter that has been through probably more than Caydence has that ended up having to get a trach too. She is almost five years old now and is still on the ventilator. It was really nice and helpful talking to them about their experience with having her home on the vent. They gave us a lot of great information and even offered for us to come to their house and see how they have things set up to get an idea of how things work at home. I feel like this whole week we have been moving non stop with training and meetings and everything, but in the end it will all be worth it when we are able to bring Caydence home. I thought I was just going to give a little update but obviously this turned into a big update so now I am going to try and get some sleep. I just wanted to say thank you to everyone that has been there for us and for all the thoughts and prayers. It means so much to us. And I also wanted to say sorry to all of you at work, hopefully I will still have a job to come back to.