Well we thought we had a four week wait with a dec 19th surgery date but found out today it’s been moved up to this Friday! Her symptoms have increased and the ns doesn’t want to put it off, had a cancellation for Friday and gave it to Grace.
We are freaked out and really hoping that we are doing the right thing for our baby. I feel so bad knowing she is going to be in so much pain. She’s so little she won’t even know why this is happening. Huh, this is so hard.
Please say a prayer for our little lady and for the surgeon operating on her.
Kelly, I will absolutely be praying for Grace and her surgeon. Yes, this generally comes with some pain, but for me it was virtually pain free. Besides some throwing up initially I just slept after surgery for 4 days straight. My discomfort was so minimal that when the nurse would ask me if I was in pain I would actually have to think about it, then would fall right to sleep again. Usually kids do a little worse with the anesthesia, but better with the pain. I can’t imagine being a parent and making the decisions you have, but just trust that your reasons for having her checked out in the first place were right, and that led you here. Im thinking positively for you all and sending my strongest prayers.
Will you please keep us up to date- we will be waiting to hear about our tiny friend.
Thank you Jenn, Onie, her symptoms originally were cronic vomitting over the last year and not walking… She did test after test with the Gi. The final test they ordered was the MRI which showed the chiari. After the diagnosis a few other symptoms became more obvious. She will ferosiouly grabb and scratch at her feet. Fall to the ground and say owie, and is very off balanced. Just in the last few days it seems she’s having a hardship time swallowing, she won’t eat anything that needs to be chewed. She starts gagging, panics and pulls the food from her mouth.
I’m trying so hard not to second guess our decision.
Kelly you are doing the right thing! Im in the same boat with my son. He is 11 months oldvand I believe hes getting worse. He was just diagnosed 2 months ago. Never second guess yourself…as a momma you know your kiddos and you know when things aren’t right!
Thanks everyone. You are making me feel better about our decision. Just tonight she was grabbing her feet saying owie. Gosh, I really hope surgery helps her. Surgery is at 11 am Friday.
Thanks for your support and thoughts and prayers
Kelly
Surgery is bumped to 9:30 tomorrow. I appreciate all your thoughts and prayers for our little Grace. Please pray for her surgeons skill and knowledge and for mom and dad’s sanity!
Thank you!
Kelly and dad, consider it happening. I believe that Grace is going to smoothly coast through the surgery. I believe that her surgeon will be calm and precise, and extremely pleased when it is done. Please keep us in loop.
Thank you everyone for your thoughts and prayers. I remained really calm while surgery was happening and I think it had to have been all the prayers coming my way.
Surgery went well. Didn’t need a duraplasty. Had a c1 laminectomy and decompression. the surgeon said her c1 vertebrae was abnormally thick and causing the c2 to shift forward. We came home today. She’s had a really rough couple nights she’s had a lot of pain which they had a hard time managing the first two nights. We have learned that we need to be very scheduled with the meds or she gets terrible pain. Day 2 she was out of control in pain. Oxy, morphine, Valium, Tylenol and bender yo couldn’t keep her settled! The nurse called the on call neurosurgeon at least three times. Finally at almost 2am he decided to come over and check on her but she had just fallen asleep. He told me day 2 is the worst and this surgery is the most painful they do because of cutting the neck muscles. So sad to hear.
Right now I keep asking myself if this will be worth it as her recovery has been harder than I imagined by far. I’m hoping she turns a corner soon and I’ll be completely happy we went through with it.
Any tips to help her recover? Are we supposed to try heat or cold? I’ll try anything to give her relief.
Kelly