It's been a long and difficult day but I hope tomorrow brings good news for Caroline. She continues on bowel rest and is starving which is almost unbearable to watch as a parent. I had more than one breakdown today trying to get her to calm down with a pacifier and some sugar water - but I know I'd be just as angry as Caroline if I couldn't eat! We did get some test results showing that she has some sort of thyroid issue which may also impact her diabetes insipidus and cortisol. I was in the pump room when Dr. Casella (pediatric endocrinologist) came by to discuss her results so I didn't get to ask him any clarifying questions about what this all means. I hope he stops back by tomorrow. Tonight she was started on a thyroid drug and we will test all of her hormones again in a week to see what impact it has had. This morning the docs tried to insert a PICC line again but that didn't work so that had the surgeon put in a central line again. Poor thing went through hell today and is hungry on top of it. She is with nurse Nancy tonight so I don't have to worry about her care... if there are any big changes over night I know she will call me. The surgeon took a look at her x-ray today and didn't think he tummy looked too bad - she will get more x-rays in the morning and if all is good she might be able to start eating again - or at least go back on TPN and lipids.
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| Apparently one arm wasn't good enough for holding in her pacifier! |
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| "Look what I can do Mom!" |
I came home tonight from the hospital and found this beautiful quilt hanging in a bag on my door. There is a group who makes these for long-term babies and kids from David's House. It was a very nice surprise!
Hope the thyroid medicine helps sweet little Caroline.
ReplyDeleteAimee, you're doing great holding up under so much stress. Know that we love you and are thinking of you, Caroline, and Tyler always and wishing you all the best.
The quilt is so nice. How special for you.
Love, Aunt Lisa
Praying for you to get good news today and that Caroline can start eating again. The quilt is beautiful. What a nice thing to do.
ReplyDeleteThyroid issues are on my side of the family Aimee, my Mother (Great-Grammie Turcotte), and both of my sisters Kelley and Nancy all had/have thryroid disease, and my brother Rick just had surgery 6 months ago as well. Perhaps this might be helpful information for the doctors, you and Tyler. Our hearts are with you more than ever, and that of course includes Fred and Brody.
ReplyDeleteLove, Susie and Dennis
Just had a sleepless night with Estelle who was vomiting and had a fever of 105. Thomas and I thought of you guys because whenever our children are sick, everything just stops. I know you must feel like you are in a bubble. Praying for you and sweetie Caroline. xoxo
ReplyDeleteAimee, I hope today goes better for you both! Hoping Caroline is cleared for eating and feeling lots better. So glad you are where you feel comfortable that she is in good care. And a beautiful quilt; what a sweet gift. One of our classes at Irasburg used to make 4 quilts every year for the Linus Project; now I realize just what a sweet gift they are.
ReplyDeleteJoanie
It must terrible to know that little Caroline is hungry...I can't imagine.
ReplyDeleteKnow that you are doing everything you can for her right now. You are in my daily thoughts and prayers.
xoxo
Aimee, I hope that Caroline's thryoid issues can be treated, so that she can turn the corner, eat and grow! Thanks so much for taking time out of your crazy and emotional days to keep us abreast of how you are all doing. We are thinking and praying for Caroline, you and Tyler. Glad you feel safe, have great nurses, and other moms there for support!
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