Thursday, January 1, 2015

Four days and counting...

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. 

And on that note, Happy New Year! Our new year was pretty uneventful as far as new year's activities go although Mr. Rochester and I did stay up late to ring in the new year which doesn't happen most years. Honestly, I appreciate my sleep. Usually, at the beginning of each year, I try to make SMART goals, but I've come to the realization that having measurable and specific personal goals kind of stresses me out, especially when I don't reach my goals (which happens frequently). So this year, I'm going to make broader goals/ideals focused around general well-being, peace and happiness. Because that's what I need in my life right now. I hope the new year is full of blessings and happiness for all of us.

7 comments:

crrstal said...

i know it is all scary for you but when you look at that Beautiful little girl i bet it seem all worth it heck i'm scared for you my son got asthma when he was 3 weeks old and i was only 18 i was so scared to to even touch him but i knew i had to just to look at him made it all worth while and now he is 23 so i did it and i know you can do and i will pray for your strength to be strong . But you are a MOM and that is all you need good luck and enjoy that baby girl luv you your cousin crystal...

Jani said...

Goodness, what a lot to process! I love your attitude about this whole situation, you are absolutely right. You WILL figure this out, you WILL make things work. You and Eddie are strong, capable, loving parents who are doing what is very best for that sweet baby girl and what a miracle she is! I'm just so thrilled for you--cautiously hopeful, right? Still praying and sending love.

Nonnie Light said...

I am so excited and thrilled for you and Eddie at the news of having a date to bring your beautiful baby girl home. My emotions were all over the place just reading your blog. I cannot even begin to imagine what you must be experiencing. Heavy duty prayers will continue for you and your family. May you continue to be blessed with all you stand in need of to care for your family. Love the Lights.

Lissa Chandler said...

You are amazing, Aria.

Jenny said...

Wow. I often read your posts more than once, just to take it all in. It sounds overwhelming, but then I think about you and Eddie and how wonderful and capable you both are. I know you will figure it out and things that now seem so huge will feel less daunting as the days pass. Maybe with time some of the medical costs for the drugs will go down and it will become easier to administer. I hope so! Wish we lived closer by to lend a hand, but you have a great community who I know will be there for you. May your new year be happy, healthy and peaceful. Can't wait to see pics of little Dorit in her home.

Michelle said...

you.amaze.me. prayers and thoughts with you!

Katie @SwimBikeQuilt said...

Good luck! I cant believe how daunting this must feel. And how stinking exciting! Prayers and love for you guys!