Thursday, March 2, 2017

First [real] bath

On Tuesday, Little Dorrit had her first real bath where we could put more of an inch of water in the tub and she loved it! Because she wasn't used to having so much water in the tub, she kept slipping and sliding all over the place. Another thing she kept doing was using the red cup in her hand to pour water all over her belly. It was so neat to see her just enjoying such a simple thing - she's never really felt water over that part of her chest/stomach before so I imagine it was a new and different sensation for her. One of her favorite things to do is color and for Christmas, she got some bathtub crayons that we've been waiting to break out until this very moment. The bathtub crayons were a hit and I think her only complaint would be that bathtime wasn't long enough! 

Sunday, February 26, 2017

Ports and lines

For the last two days, Mr. Rochester and I have both successfully stuck the port on the first try where we were able to draw back and see a blood return. This is great news for us! We've only been able to do this because honestly, we have the best home health nurse. She's come to our home once a week to see us since Little Dorrit came home from the hospital - and for the last four days, she's come every day, first to teach us how to use the port and then to supervise us as we do it. Throughout the whole process, she's provided great encouragement and advice to us which has helped us feel better about learning how to use it. However, tomorrow, we're on our own! I feel like we are familiar enough with the process to administer the medicine on our own and we "understand" what we are supposed to do if we stick Little D. and miss the port, it will just be a matter of practicing.

One of the big differences between using the port and using the Broviac is that now when we give Little Dorrit her medication, it's a sterile procedure since we are actually putting a needle through her skin. So, we have to put on sterile gloves, use a sterile field and make sure that nothing contaminates the gloves, needle, field, etc.

Here's a video we recently made of what we did to give Little Dorrit her Ceprotin when we were using the central line. Using the port is a bit different.
I'd love to share how we give her medicine through her port but I imagine it will be awhile - right now there is a lot of crying involved with one person wrestling an angry two year old while the other one attempts to stick the port as sterile-ly as possible.

Thursday, February 23, 2017

Learning to use the port

This morning Little Dorrit's nurse came to teach us how to use the port to give Little D. her medicine. Mr. Rochester did a great job of removing the dressing and the needle. Then he administered the medicine while I held down Little Dorrit. She cried a lot but I think, mainly because we have to hold her down. And she hates that. At one point, the nurse was holding her legs while I was holding her arms so nothing "unclean" got in the way of the sterile area in which Mr. Rochester was working.

Tomorrow, it's my turn to learn how to stick Agnes in her port to give her the Ceprotin. Honestly, for me, the whole sterile procedure is a little overwhelming. And I am terrible at it! I know I should think positively but I'm really just being realistic. Before we were able to take Little Dorrit home from the hospital, we had to show that we could perform the dressing change for her Broviac (which is also a sterile procedure). I think I went through about five different pairs of sterile gloves when it was my turn to practice changing her dressing. Tears were also shed. After several attempts, we were able to prove we could perform the dressing change but thankfully, when we got home our home health nurses did it for us every week and spared me the trauma. But this is something different. We will have to access her port every day to give her her medication which means we will just have to get used to it. I know we will but it will just take time.

This is the first picture, I think, we have over our little girl with nothing hanging out of her chest. (Don't mind the books - she loves "reading" books and taking them off the shelves. Also, she's obsessed with the gloves the nurses use.) This sweet thing has many scars on her body but "Though she be but little, she is fierce!" And she is fiercely full of joy. 

Wednesday, February 22, 2017

Her normal self

Little Dorrit's surgery went well and she is quickly recovering. It didn't take her long to get back to her normal cheery self and we are so glad she's feeling better. The only thing she seems to struggle with is climbing up onto the couch. She'll look at us with her arms outstretched and say in a pitiful voice "Can't climb." I believe she is still a little sore from the surgery but her main hindrance comes from the bulkiness of the needle and dressing over her port.

Sunday, February 19, 2017

Port Placement Surgery

Tomorrow is a momentous day for our family! Little Dorrit is having surgery to remove her Broviac (central line) and replace it with a port. Currently, this is what her central line looks like:

We use her central line every day to give her Ceprotin which is just a human concentrate of Protein C. This line is tunneled under the skin and attached to a vein near her heart. Tubing from the line extends out of her chest and is covered with a transparent dressing which has to be changed every week. The end of her line is covered with a cap and part of the capped tubing hangs out of the dressing. Every day, we screw on the appropriate syringes in the appropriate order (saline, Ceprotin, saline, venk hep) to the end of her cap to give Little Dorrit her medicine. 

Using a central line to give Little Dorrit her medicine means that we don't have to poke her with a needle every day (Hooray! Who wants that?) but it also has its setbacks. Because the line comes straight out of her chest and requires a dressing change each week, there is a larger risk of infection. The entry site for the line is covered with a Tegaderm dressing which is great, but you are not supposed to get it wet which makes bathing a challenge. Our bathing solution for Little Dorrit has been to cover her dressing with Glad Press n'Seal wrap and only wash her in the tiniest amount of water in the bathtub. It has worked well for the past two years but central lines like hers are also not meant to last forever. In the past two years, Little Dorrit's line has torn twice and has luckily been repaired both times. Lately, Mr. Rochester and I have been feeling that we are on borrowed time and that it's probably time to get a port.

Replacing Little Dorrit's central line with a port that is under the skin will mean that we have to stick her with a needle every day in her port site but it will also mean that she can take a real bath and go swimming some day as well as providing a reduced risk of infection. The port placement surgery is an out patient surgery that will take about an hour and a half.

As we learn this new and different way of giving Little Dorrit her medicine, Mr. Rochester and I are both a little nervous although we feel confident that this is the right thing for her.