Wednesday, December 10, 2014

She's keeping an eye on it...

This weekend, Mr. Rochester, Trotwood, and I will be heading to St. Louis. Mr. Rochester and I have a packed weekend scheduled full of training with central line and liver transplant nurses. We should learn how to give Little Dorrit her feedings through her G-button and also learn how to change the dressing on her Broviac catheter. Last week, when I first started learning about all that would be involved in Little Dorrit's care at home, I felt a bit overwhelmed. Different medical professionals we've been working with have assured me that taking care of her Broviac and G-button is definitely something we can do and eventually feel comfortable doing. In fact, they said they won't send her home with us until we feel very comfortable with everything we will have to do.

Next Tuesday, Little Dorrit has her eye surgery scheduled to remove the hemorrhage in her right eye. Hooray! After the surgery, she should be able to see out of her right eye again although she will have a case of amblyopia (lazy eye). We hope with the right types of therapy, she will be able to strengthen the muscles in her eye eventually. Little Dorrit's nurses are also working on getting her down to bolus feedings which is only giving her food a few times a day, like a normal baby would eat. She has been on continuous feeds for a long time where she gets her food over a two hour period with a one hour break. Getting her used to bolus feedings before she comes home would be a great help to us. But, again, everything is up to her because she is the big boss. 

This week, Little Dorrit is also being evaluated as a candidate for a liver transplant. After her condition was diagnosed, we'd discussed the possibility of a liver transplant for her eventual treatment, as the liver is where protein C is produced. When her hematologists brought it up to me again a few weeks ago, I guess I just didn't realize that they would want to have her evaluated while she is still so young. This Friday, a group of doctors will discuss Little Dorrit's candidacy for a new liver, and Mr. Rochester and I will be meeting with a liver transplant nurse on Friday to learn more about all of this. Sometimes, I just have a take to take a deep breath and focus on one thing at a time so I don't feel completely overwhelmed by all of the decisions we have to make concerning her care. A liver transplant sounds great because if it is successful, it could completely fix Little Dorrit's protein C issue. And yet, a liver transplant can have many risks involved with it and it's another condition where she would have to be on medicine most likely for the rest of her life. So, that's us for now. I can't wait to see our little girl this weekend and I hope we can bring her home soon!   

4 comments:

Jani said...

A liver transplant, what an amazing idea! Like you say, it comes with its own challenges and risks but to have it as a possibility must be amazing. What a blessing this sweet girl is and what a wonderful team she has supporting her!!!

Joeby said...

Modern medicine is such a miracle! And, you have your very own miracle baby. Sending prayers for you all, the baby, the doctors, and her angel nurses! Love you bunches!!

Kelly said...

A liver transplant! That is amazing that it's even an option. I hope you have a good weekend. It is a lot to take in, but like you said, they'll make sure you are prepared before sending you on your way with her. I appreciate these thorough updates! I check your blog every day :) we love your family!

Kel said...

If I could be so bold as to make a suggestion prior to her discharge...

I would highly recommend making sure there is at least one expert professional closer to home that is highly familiar with your daughter's case and trained in everything that has and could happen with her health care decisions. I would also highly recommend setting up home health care or some other method of getting easy help with broviac, g-tube, etc, once you're home.

When we came home we had also become familiar with our daughter's care while in the hospital. But as soon as we were by ourselves, it still seemed so much more overwhelming. If you can manage to have some help at/near your house during that transition phase, I think you will feel grateful. Even if you don't need it, it may feel more comfortable knowing you're not second-guessing your own training.

Have a WONDERFUL weekend in St. Louis! Aren't you so glad you made the choice to deliver with specialists!?