Anyway, Emma was sleeping, eating, drinking, peeing, and pooping well...so off she went on Saturday afternoon. My only hesitation in sending her home was coming off of the magical med for nerve pain, something you can't go home with. Instead, she went home with Loritab, a medicine I sincerely despise. She felt decent on Saturday but not great. We had a hard time getting her to take the Loritab, but we finally figured something out.
On Sunday, she acted like she felt much better, but she was still a little weak, even after 12 hours of sleep. The bad news about Sunday was that two incisions were compromised: poop got in her lower back incision, all the way up to the weakest point in the incision. This happened exactly one week after Emma was born, too, and it went completely downhill from there. Later in the evening, I noticed something that looked like marker on her fingers...it was dried blood. She had scratched through the incision on the back of her head. Her incisions are covered in this stuff called Dermabond. It looks like a thick coat of clear nail polish that eventually peels off. It's heavy duty, though - if you try to pull it off, it will pull hair out by the follicle. She has been constantly trying to scratch her head/neck for days because the Dermabond is starting to peel off, and it itches. We can't take our eyes off of her for one little second!
Today, Monday - much better! I didn't think it would be that way when she woke up, though - wow, what a mood she was in. She asked me where Daddy was, and when I told her that he was work, she cried and said, "Nooooo!" And a few seconds later, "What are we going to do about Daddy?" Then after breakfast, she said, "Can Daddy bring me a biscuit?" She sure loves that man. And so far, the incisions look ok, but we're on high alert for infection.
Puzzles, crafts, coloring, and Disney Junior DVR has been our whole life lately. Our biggest challenge is definitely keeping her hands occupied. Think about it - if you have an itch, you scratch it. Five minutes later, if someone asks if you scratched an itch, do you remember? Probably not. This is what it has become with Emma: an unconscious response which could result in something pretty dangerous. So we are pulling out all the entertainment stops, especially with puzzles. This child could do jigsaw puzzles all day, every day...for real.
She took a break from the puzzles, coloring, etc., to play with her Doc McStuffins dolls...and this isn't even all of them.
I feel like we're going through this whole experience in stages: (1) preparing for the "big day;" (2) making it through surgery day; (3) enduring sedation and getting her meds right; (4) getting Emma weaned off the sedation meds & difficulty breathing from extubation; and (5) getting the incisions healed. That last stage is the longest, and so much hinges on it: bathing, wearing pants, brushing hair, washing hair, crawling around to play, going to therapy, going back to school, diaper changes...the list goes on and on. And this baby I'm carrying around isn't getting any smaller. I'm just ready to get back to Emma being able to do things on her own...and HER normal level of independence is lower than other kids her age in the first place.
Mary Beth, You truly have your hands full. I wish I could help, even in the smallest of ways. I know you are trying to keep her healthy, however, if I can come help, I will be happy too! I am continuing to pray for all of you! Love ya'll dearly!~ Holly
ReplyDeleteI am so glad to see her happy in that picture! I know she isn't back to her "normal self" again yet, but there is so much improvement. We are praising God for getting you through the first four stages, and are praying for peace, comfort and patience as you get through this last stage. Much love to all of you!
ReplyDeleteMeredith Smith