Maddie is slowly gaining progress. We cant get her to eat or drink because the nausea is so bad. PT had her up toda,but she vomitted. She did urninate for the first time, as she could not the past 24 hours, they had to put the catheter back in last night to drain her bladder. Trying to get her to eat and drink, hold stuff down so she can change to oral pain meds which will make things a lot better. A 4am today, the tears and pleas of, "Mom, please help me!" Were more than i could bear, I would take this pain from her in a heartbeat if I could. f course I question myself on whether I made the right choice, I know its early but so difficult to see her this bad. Watching her walk is also scary, its like she is learning all over again, but they say most of that is all the pain meds not necessarily the surgery. Looking forward to taking that corner, trying to be patient!
If her pain is in the upper part of the incision, the drip works but if it is low, it is a muscle relaxant thing. Vicks vapor rub under her nose might help with the nausea - it did for me. They probably sell it in the gift shop. Be vigilent with the nurses that she gets her muscle relaxants on time. The worst pain that I ever felt with the surgery was when I was in the hospital at that exact time of the day (4-5 am) when the muscle relaxant wore off and the nurses were usually late in getting me my morning dose. Plus, I don't know how the pain Drs. gauge dosage for children when it comes to muscle relaxants but when they come in I would disuss what muscle relaxant they have her on and what the dosage is. I suggest that you try to get her diazapam - it works much better as a muscle relaxant than Flexerill and also will calm her anxiety as well. If the pain is lower (neck), an ice pack on each side of the incision helps as well. If you don't have them, ask the nurse for two. Hang in there. I can't imagine what is like having a child go through this. You and your daughter are in my prayers. Fr. D
I feel your pain and frustration. My granddaughter had her surgery last wed. and it has been much tougher than I ever thought. Lots of pain and nausea. She barely sits up and has only walked a few times because of the pain she feels when she is up . She has very little stiffness and no real pain in the back of her head. It just hurts her to walk. She spent 5 days in the hospital due to her nausea. I cannot tell you how many tears I have cried watching this 4 year old beg the nurses not to hurt her. They all say that the young ones do so much better. It has now been one week and I hope her pain starts to decline soon. My prayers are with you. Let's hope this all becomes just a memory soon.
I had a 72 hour nausea patch and a prescription for Zofren after surgery. This took care of any nausea.
Can they not give these to children?
Zofran worked well to control Alexa’s nausea. It was given IV and then switched to oral. Our NS did tell us that while this surgery is not considered dangerous, recovery is very painful :(. Alexa participated in a study jointly run by CHOP and another institution to assess pain management after this type of surgery. The problem is they have to assess your child neurologically while controlling the pain…a delicate balance. The first week was rough even though she was discharged two days after surgery. I, too, would rather have taken all the pain then to watch her suffer. There is light at the end of the tunnel and I am praying for you and your family.