Baby Kennedy

Baby Kennedy

Tuesday, April 19, 2011

How's She Doing? 16 hrs post-op

We are so happy to have Kennedy back in our line of vision. Notice I didn't say back in our arms? That's because we can't hold her for the 5 days she is ordered to stay flat. So imagine your sweet little baby going in for surgery, hurting and fighting the anasthesia after, and then, not being able to hold her... That's what we have to do and what all TCS parents will have to go through after their loved one goes through this surgery. I believe a majority of the time, many TCS patients are only ordered flat for 2-3 days but it all depends on the type of tether and how much work had to be done while in surgery.

When we got close to the recovery room doors, we could hear growling/screaming before they even opened the doors. I felt so bad for that baby. As we entered into the recovery area, it grew louder and sounded like that baby was putting up a tough fight. Poor baby, is all I thought.

Guess who that baby was... Kennedy! She HATED coming off the anasthesia. She was up on all fours (which is a no-no) screaming, rolling, fighting. The nurse said in the 3 years she'd worked in that area, she had not seen a baby fight that hard and that long. Hmph! I didn't really want to hear that.

My advice for other TCS parents: DO NOT PICK UP YOUR CHILD. We were prepared ahead of time that it was not allowed until the orders for her to be flat were discharged. Imagine our surprise when the recovery nurse asked if we wanted to hold her! Sheer shock and excitement! However, we later found out that doing that was a big mistake on her part and that she never should have allowed us. Just don't take the risk. If someone tells you that you can hold your child, especially right after the surgery, offer to comfort them at bedside instead. Just don't put your child at that risk.

We are now in a regular floor room at Duke and have had wonderful nurses and NA's since her arrival to the floor. Kennedy continues to fight the effects of the anasthesia and is having a hard time sleeping because as soon as she falls asleep, she twitches - which hurts and then she cries and is awake again. Since 12:15am, she's gotten more sleep and seems to be doing a little better; however, now her temp is rising. It was over 100 F at the last check. The major risk with fever is meningitis since that cord and fluid were exposed. However, Kennedy is also pulling on her right ear like crazy. Since we've had 6 ear infections in the past 10-12 weeks, I would not be surprised if we have another. An order was put in at 4am by Dr. Fuchs resident to do an ENT referral while we are here and flat for 5 days. Poor baby girl...

I look all around me at this place and I see beautiful children. So many of these children have more difficult, longer battles to face than we do at this time. All around us, we see beautiful paintings and wall quilts marked with the words "In Memory of..." This place is humbling and I am so very lucky to be blessed with such a healthy, loving little girl. We will get through this and one day, I hope to tell Kennedy all about our experiences here in hopes that she will give back to her community that once gave her so much.


  1. While this is a difficult time for you and your family, I hope that Kennedy has a speedy recovery and your grief and helplessness is limited. Everyday we forget how lucky we are, and take too much for granted, I am glad you realized how lucky your family is, I too have had an experience like this and as you mentioned it's very humbling. Best of luck to you all and hope you get your little Angel back in your arms quickly!!!

  2. That fighting spirit of hers will do her well in the days and weeks to come during her recovery! It sounds like you and Nick are holding up well. Your blogs are great, and help to keep the rest of us in the loop. THANK YOU!!! Prayers will be continued to be said for the Collers!

  3. That fighting spirit of Kennedy's will get her and you through this ordeal. Prayers sent for a speedy recovery. I will keep you and the family in my prayers and may Kennedy feel his comforting hand!