After staying with Little Dorrit in the FP room for two nights, Mr. Rochester and I were pretty exhausted. I feel more prepared now to take her home although I know I still have a lot to learn. This past weekend, we provided all of her care except administration of her Ceprotin (the name of the protein C drug) and the only reason we didn't do that is because the way we do it at home will be different than how it is done at the hospital. Home. That's right. If all goes as planned, we are scheduled to take our sweet baby home from the hospital on Monday, January 5th. I can't believe this is actually happening. I'm excited and nervous and feeling overwhelmed all at the same time.
The last few days, we have been working with home health and medical infusion services to learn about the equipment and care Little Dorrit will need when she gets home. She has to have her Ceprotin every 8 hours (3 times a day) and we learned the process of how to give it to her. It is a refrigerated powder that we have to combine with sterile water by gently swirling it together (not shaking it) until it is dissolved. Then, we administer it through her Broviac. Before giving it to her, we have to flush her Broviac with saline, then give her the medicine, then flush with saline again, and then flush with heparin. And after the powder is combined with the water at room temperature, it is only good for three hours. Honestly, I felt a little overwhelmed learning all of this, especially realizing we will have to schedule practically every minute of our lives around her medication. Oh, also, we found out how much her Ceprotin costs. Everyone had told us it was outrageously expensive, but I had no idea. For the dose of Ceprotin that she needs, it costs $2500 per day. Per day. I still feel a little sick when I write that. And this is something she will need for the rest of her life...unless she is just put heavily on blood thinners as she gets older...or has a liver transplant but that procedure and the immunosuppressant drugs aren't cheap either and involve other risks.
Although it's easy to get caught up in thinking about all the medical costs and changes that will have to happen in our lives, I'm not going to focus on that. I. just. can't. If I do, or perhaps I should say, when I have focused on those things, I find myself alone and in a very dark place and that is not where I want to be. I have no idea how we will be able to make this all work or how we will be able to afford her medical expenses year after year, even with insurance, but somehow, we will make it work. I'm not going to let myself sink into the "depths of despair" and focus solely on how difficult our situation may be (although I'm sure I'll have days like that). This year, I want to embrace life with all of its beauty and hardships, come what may and love it. And I'm going to try to remember and focus on that.