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. 

Tuesday, November 8, 2016

Road trip!

November 1-7, we took a family road trip to St. Pete Beach, Florida. Mr. Rochester participated in a conference there and we decided to drive down there as a family. We stayed at the Guy Harvey Outpost at St. Pete Beach and we loved it! We had a one bedroom suite that faced the ocean. The view was gorgeous and at night, we could put our kids to bed in one room while we relaxed in another. 

Neither Trotwood nor Little Dorrit had ever been to the beach before so this was a new adventure - actually, it was a new adventure for all of us because with Little Dorrit's central line, we had to figure out ways to keep her from getting the dressing over her line wet from the ocean water. Thankfully, Little Dorrit seemed more interested in chasing sea gulls and playing in the sand than actually getting in the water. In fact, she was a little terrified of the waves and didn't want to have anything to do with the ocean so keeping her dressing dry wasn't a problem. Before we go out of town somewhere with Little Dorrit, I always worry that something might happen so we have to do some research to know where the closest children's hospitals and any ERs are located along our route. We were so lucky to all be healthy on this trip. It really was wonderful to get away for a week.  

While we were in Florida, we got tickets to go on a pirate cruise ship. I know Trotwood enjoyed himself but Mr. Rochester and I were glad when the two hour boat ride was over. It really was just a booze cruise where the parents drank and the pirate ship crew had different activities to do. And since Mr. Rochester and I aren't into boozing, we just tried to keep Little Dorrit happy most of the time and stay out of the way of inebriated folks. We did take pictures and look, we're smiling. Proof we had fun, right? 

One day while Mr. Rochester was at his conference, I took the kids to Tampa's Lowry Park Zoo. It was an exhausting day but both kids seemed to have a lot of fun. The main things Trotwood wanted to see were the rhinos. And they had the cutest baby rhino ever. 
Also, I couldn't resist buying the super overpriced pictures that they took of us in front of a green screen when we got there. It's a vacation. We'll have the memories forever. That's what I kept telling myself. 
On the way back from Florida, we stopped in Mobile, AL to see the USS Alabama Battleship. I will say, it was exhausting carrying a two year old up and down narrow spaces and stairs in the battleship, but despite that, touring the ship was a lot of fun. When I was little, I remember my parents taking me to this same park and I thought it would be a neat experience for our family. While in Mobile, we ate at a Ralph & Kacoo's which is a restaurant that my parents used to take me and my siblings to when we were little and lived in New Orleans. I didn't know there were any of these restaurants outside of New Orleans so we decided to eat lunch there.
Our last stop on our trip was to Vicksburg National Military Park in Mississippi. We actually were able to meet up with some good friends who happened to be in Mobile at the same time we were and they were driving back to Fayetteville the same time we were. So, we all decided to tour Vicksburg together - I know Trotwood enjoyed running around with some friends that day. 

From this trip, I've learned something. We need more vacations. And next time, an actual full on vacation where there is no conference involved. It was wonderful, exhausting and rejuvenating all at the same time. 

Tuesday, November 1, 2016

Farm Friends Pumpkin Patch

Amidst all our other Halloween activities, we managed to squeeze in a trip to a local pumpkin patch. We tried a new one this year and the kids loved it. We thought it would be chillier than it was but it was warm and in the upper 70s. We spent a few hours with the kids there doing the different activities available including a corn maze (we did the abbreviated one), getting pulled on a trailer behind a tractor, feeding some cows, racing "tractors" (below) and playing in a giant bed of corn.
We didn't take Little Dorrit's stroller into the corn maze because I thought it would be too bumpy for her so we let her walk. That was before we learned that it takes at least an hour to go through the entire corn maze! Thankfully, we were able to find the short cut and enjoy the abbreviated time we were in the maze instead of getting frustrated about not being able to get out of it with two small children. Both Trotwood and Little Dorrit loved running around the maze.

But their favorite part was this giant box of corn - the both just loved getting handfuls of corn and rolling around in it. It's just a huge sandbox...full of corn.

Here's the one family picture we got on the tractor ride - it was really windy - and I'm not sure why I look like a hunched over old lady but here's our family picture!