Tuesday, March 10, 2015

Just a few things

Yesterday, Little Dorrit had an appointment with her hematologist. Thankfully, the appointment was at a local(ish) clinic so we didn't have to drive all the way to Little Rock. At the appointment, her doctor said that we could start giving her the Ceprotin medicine twice a day (every 12 hours) instead of three times a day (every 8 hours). We will be increasing the dose a bit but her doctor thinks that her lowest protein C level will be okay if we do this. Giving her the medication twice a day will definitely make our lives easier but Mr. Rochester and I were still really nervous to start doing this yesterday. Little Dorrit won't have her labs drawn until Friday sometime so it will be next week until we know the results of her protein C low level, or trough. So far, everything seems to be fine. We just worry about blood clots if her protein C levels get too low. I would feel a lot better if we could have the labs drawn a day or so earlier so we could find out the results earlier.

Physical and occupational therapists have also begun seeing Little Dorrit in our home. She seems to be doing well in both areas, although, of course, because of her time in the NICU, she is developmentally behind. She doesn't roll over and has weak muscles, but I know she'll be able to catch up at some point! Her physical therapist also recommended that we get a scan done of her head. Because she's spent so much time lying on her back, the back of her head is pretty flat and she may need to wear one of those baby helmets. I don't know much about this but after doing a google search, it seems like there is some controversy on whether or not these helmets are actually effective.

Little Dorrit is also supposed to be starting speech therapy but for some reason we've been having trouble getting the doctor's script back for her on this and she can't start speech therapy until the therapy team has this. The amount of food she takes by mouth has decreased to about 15-25 mls and before we had it between 30-50 mls per feeding. So, that is a little discouraging. Every three hours during the day, she gets 100 mls of formula. Whatever she doesn't take by mouth, we put through her feeding tube. I hope that once she starts speech therapy, she'll do better at taking a bottle.

Two nights ago, Little Dorrit pulled out her G-button but this time we did not go to the emergency room. Mr. Rochester and I just followed the instructions to put it back in and I think we did it correctly...but I feel like I still need to call a doctor or someone to confirm. What if we did something wrong somehow? She's had her feedings since then and I think everything is okay...but it's still hard not to worry that we messed something up somehow. Sometimes, all this medical stuff makes me weary.

Today, I started back to work part-time. I'm still able to be on the catastrophic leave program and working part-time will allow me to stretch out the hours I have left in that leave program. I'm hoping working part-time for awhile will help us get everything more figured out to where we can  manage it when I have to go back to work full-time. Who knows? Maybe by that time Little Dorrit will be using just a bottle for all of her feedings!
I seriously can't believe how much she loves the little Lamaze horse she is grabbing in this photo. It's one of her favorite things. 

1 comment:

Kel said...

It can be wearing... wearying... is that a word? There's so much to do all the time, no? But you are doing it. And she has you. And you have her. What a perfect family.

I was glad to read about her toes. I think it's funny you didn't string them on your warrior necklace. ;)

Let us know when you get the results on her 12 hour Protein C infusions. Sure would be great if fewer doses really becomes an option! And also AWESOME JOB taking care of her G-button!!! I'm way impressed by how much you've learned and how quickly.

Much love, as always, and I very much wish I could be there to help... provide a little relief from time to time. I know how hard it can be to find a "babysitter" when there's medical equipment and medications involved. I'd spell you some time away if I could! And since I can't, just remember that I'm thinking about you.

Oh! Also. Saw that her feedings are decreasing and your speech therapy isn't on board yet. I suggest you ask your OT to step up. S/he can probably get the ball rolling in the oral aversion department. That's what we did, and it worked great.