Thursday, January 28, 2010

Kaela's surgery and pre surgery test

I think Facebook is to blame for making the blog suffer. I know I've posted this on fb, but I know I really need to keep this updated more. Matt and I are going to do our best to update this blog with Kaela's surgery updates for our friends and family and also for people that come across our blog looking for answers about MD. Many families have found our blog, so we are going to do our best to keep up on this.

Kaela had her MRI and CT scans done 2 weeks ago. She did great and the nurses and anesthesiologist were all very prepared for Kaela. Because she has spinal cord injury, they were a bit worried about doing these test since they have to put her to sleep for them. In the past, they've always put the tube down her throat, but when they do this, they tip the head back. Moving the head back like that (or side to side) when you have spinal cord damage is very dangerous. It could cause more damage, which is obviously what we want to avoid. Because of this, they were going to either do what they could with no breathing tube or use a scope when putting the tube in and keeping her head still. When we walked in they knew exactly who were were and said they'd bee talking about Kaela all day since she was such a special case. This helped ease our nerves tremendously.

They've always allowed one of us to go back with her when they've given her the gas, but this time they didn't let us do that. They said they had to take extra precaution due to the injury, so they gave her some medicine to relax her before they took her. Poor little Kaela was very out of it. She was really funny at first, making silly faces and just being really silly, but then it was really sad because she couldn't even hold herself up. That was hard to watch.

The doctors got the images of her full spinal cord and said that there isn't much room, and we may have to look into doing something for that down the road. Not sure how far down the road, but hopefully no time too soon.

The surgery is scheduled for February 9th at 7:30 am. Kaela is scheduled to be in the hospital for about 5 days assuming all goes well, in the halo for 3 months, and hopefully all taken care of. There's a good chance they will have to re do the fusion surgery in a couple of years due to the fact that she's so small right now and will continue to grow. We are just taking it one day at a time right now.

Thanks for all the well wishes. We really appreciate them. I'm starting to feel more nervous now that it's next week. I'm just going to snuggle Kaela as much as I can this next week. One thing I think I'm going to miss for the time that she's in the halo, is her little face pressing up against mine. That big halo is going to prevent us from squishing our faces together :) We are also going to give her lots of opportunities to sit and wrinkle in the bath this week since she can't take a bath the entire time she's in a halo!

We go in tomorrow for a trial fitting for her custom made halo vest tomorrow. They did the plaster molding of her back about a week ago since her body is so unique with her kyphoscoliosis in the back and her chest sticks out in the front. They usually just take measurements, but they want to be sure she's not getting any bruising or anything with the vest. I will continue to keep you all posted. Here are some pictures from her MRI and CT scan.
She wanted to wear her wings and tutu (she had her want too) to the hospital.
napping while we waited about 2 hours for her MRI and CT

This is when she started getting goofy and sticking her tongue out and then laughing.

on our way long day

Sunday, January 10, 2010

Kaela and surgery

I figured this would be a good time to (finally) update the blog. We found out right before Christmas that Kaela needs c-spine surgery. Her top two (C1 and C2) vertebrae are unstable and she also has damage to her spinal cord. Her vertebrae have slipped and pinched her spinal cord. She is going to have fusion surgery to hold her neck in place to stop the vertebrae from becoming more unstable and causing more damage. She also needs decompression surgery in order to give her spinal cord more room. They will be shaving the back of the bones to leave more room for the spinal cord. The surgery hasn't been schedule yet, because the neurosurgeon and the Orthopedic surgeon are trying to get some more information together and are working to find a good time with both of their schedules. They said it should be within the next few weeks. We hope to get a call Monday telling us when it is. Her surgery will be done at the University of Michigan hospital and we feel okay about this. UofM is huge and is also a top hospital. We feel really good about our surgeons too. Kaela is a rare case, both with her form of dwarfism and with her being so young and having this surgery. They said they are a little worried about the fusion holding due to her size and being able to get it done since there's such a small area to work with. They are 80 percent confident that they can get it done, but there's a chance they would have to go back and re do the surgery in couple years due to the fact that she's still growing. They will be contacting a couple other doctors at other hospitals to get some more information. They have done several surgeries like this, just on older, usually average height people. The decompression surgery will be the easier of the two.
They have told us to try and keep Kaela from walking until the surgery and also they ask that when she's in the halo for 3 months, that we try not to let her walk. The reason they don't want her walking right now is due to her spinal cord injury. If she were to fall, this could cause more damage to the cord. Poor Kaela has gone through therapy and finally starting walking short distances on her own a few months ago, and here we are telling her to crawl or scoot on her butt. When she has the halo on, they said they ask toddlers not to walk with it, because they tend to fall a lot. There are usually 4 pins that re drilled in the skull and if she falls they risk having the pins fall out...not good. We are just going to do everything we can to keep Kaela safe.

She's such a good girl though. She just listens and does as she's asked. She had to get a neck brace put on right away when they read the results to the MRI saying her neck was unstable, and she hasn't complained once! Our little girl is one tough cookie. The next few months are going to be hard, but we have wonderful family and friends that are helping us get through all of this.

I will keep this updated as we find out more and through out Kaela's surgery. Thanks everyone for your support, prayers and thoughts during all of this. It means so much to all of us!
Here are a few pics of the kids.....