Our emotional roller coaster 1

December 22-  Shayleigh is extubated and doing well! We are having a little trouble controlling her pain. She is getting Fentanyl every 2 hours, but she is very agitated before the next dose so we are having to use Ativan to help calm her down. She  is able to eat some ice cream, 1/2 popsicle, and drink some orange juice. She is still in PICU. We make sure to ask the neurosurgeon to order something for constipation and she orders Colace and Miralax.

December 23 - Shayleigh remains in PICU. We have switched her from Morphine every 2 hours for pain to Lortab every 6 hours. The Lortab is working much better and she is able to rest between doses. She also appears to be more comfortable. We made the mistake of waiting 15 minutes later for her Lortab and ended up having to get her some Lortab and some Morphine soon after to help with pain. We won't make that mistake again. She isn't talking yet and eating and drinking aren't interesting to her. She did swipe a popsicle out of my hand and bring it to her mouth, but she didn't do anything with it other than that. She had an episode early this morning where she just stared off into space and wasn't blinking. Our nurse called the neuro on call and they think it is just due to the swelling from the surgery. They don't think it is seizure like activity because the part of the brain they operated on doesn't cause seizures. That was some good news for us. We took her dressing off today. She has an 11 cm incision. It looks really good!! It comes from the base of her neck into her head. As good and tight as the stitches are she probably won't have much of a scar and if she does her hair will cover it. She is having some right hand weakness. She wasn't moving her hand much at all, but now she can move a little. Still having trouble squeezing her right hand. She doesn't have any problems with her left hand or either of her legs. The neurosurgeon said we could go to the pediatric floor today, but we asked to stay one more night in PICU. She will go to the pediatric floor in the am.

December 24- We are still in PICU. We are waiting until a private room opens up on the pediatric floor. We told them we didn't care how long it took to get a private room we would wait!! Shayleigh still doesn't want to eat or drink. She isn't talking and is sleeping a lot. She does have periods where she wakes up and seems more comfortable. She is getting Lortab around the clock since we messed up yesterday. Hoping tomorrow that we can wean the Lortab. We got our room around 2 pm. It is a private room- YAY!  We got her bathed and washed her hair. She wasn't crazy about the bath since it was a real quick sponge bath in the bed, but she loved having her hair washed. She closed her eyes and grunted while we scrubbed. My sis in law cut her hair. It was a tangled mess and we couldn't get the sticky stuff out of it. We are probably going to eventually have to shave it since she has random patches missing, but one step at a time. Nick, my brother Beau and my mom shaved their heads for Shayleigh. So when we do shave her head she won't be the only one with no hair. Her having no hair is hard on me. It took forever to get the hair that she does have, but in the grand scheme of things it is just hair and it WILL grow back. The state police sent a giftbag with toys, socks, and a tshirt for our little princess. Our family is relieved that they no longer have to wait for visiting hours to come see us.

December 25- Christmas Day.Her pain remains under control. Child life brings her some more toys. Shayleigh is still sleeping a lot. She still isn't eating or drinking or talking. Family is able to visit whenever they want. We forget that it is Christmas Day and have made no plans for dinner so we have to scrounge around and find somewhere to eat...we settle on chinese. Mommy and Daddy LOVE the hospital pediatrician that comes to see Shayleigh.

December 26-  Neurosurgeon tells us that she thinks Shayleigh has the rare side effect that we discussed briefly before surgery- cerebellar mutism. She thinks that it is self limiting. She also tells us that the only thing we can do is wait. (GREAT lol). We can tell that she feels partially responsible even though she could not have done anything to prevent it. Mommy has a melt down. Pediatrician brings by information regarding mutism. Shayleigh goes down for yet another CT scan. We talk about putting either a peg tube or a TPT (transpyloric tube) in for nutrition since it has been 5 days since she has eaten. Shayleigh still doesn't seem interested in taking anything by mouth or in talking. Everytime we try to ask her about eating or drinking she starts crying and clenching her mouth closed. She isn't real interested in anything and sleeps most of the time.

December 27- It has been 6 days since she has eaten and she doesn't seem to show any interest in eating or drinking. We decide to try the TPT. We decide that we would like to give her a chance before we let someone cut on her again. We start giving her pediasure via TPT for 24 hours. After the 24 hours, the plan is to have continuous feedings through the night (7-7 which is eventually moved to 5-7) & turn the feedings off during the day with the hopes that she will be hungry enough to try to eat or drink something. Neurosurgeon comes by and tells us that she is praying for Shayleigh every night. She assures us that everything we are seeing is normal. She is more alert and we have stopped the Lortab. We are giving her motrin and tylenol for the pain which works even better than the Lortab. Her continous IV fluids are stopped at this time.