Thursday, February 28, 2008

...and we thought the surgery would be rough!

So, typically....Sarah does the updating of the post but she is still dealing with the 24 hour nausea of the first trimester. Yes, Kenai is home...the surgeon came in the room around 4:30 pm on Tuesday as we were considering what food to order for dinner and who would stay the night at the hospital with Kenai. He gave the go ahead and a few hours later we were walking out the door!

Updated below are some pictures of Kenai...the first is just her...at home...happy as we change her neck collar. The padding around her neck is called Duaderm and it acts as several layers of extra skin to help keep the skin rubbing against the collar from breaking down.


This second one is a picture of the incision that was made on the back of her neck. We are unable to see the front incision as it is still covered with gauze at this time. The first time I saw this I about lost it...going into this I thought I understood how invasive the surgery was...the seam in her neck just made it so much more real...

On the bright side...we are home...which is nerve-racking in a whole new way. Kenai feels so much more comfortable at home and wants to do all the things she normally would. It keeps us on our feet all the time. Elliet is home now too...which is good...she seems so grown up to me now...

So, Sarah will resume normal posting from here on out...I just thought it would be good to get something out to all those who have been asking...

Thanks for your time, Jt.

Sunday, February 24, 2008

Progress





The smiles are very few but they are starting to creep out. Especially when she thinks no one else is looking. She was laughing and playing with me and then put a scowl on when Auntie Em came in the room. Then Em got her playing and she put the same scowl back on when the nurse walked in! Today she rode the halls in a wagon. She looked miserable but kept wanting to ride more. Tonight she did some coloring, played with some new toys and stayed up far later than I had planned!

Thursday, February 21, 2008

Getting to The Other Side *Updated

This is the MRI from November, you've seen this one a couple of times now...
This is the one taken in late January or early February

This is the "after" You can see two small rods and a tiny plate. There are two screws visible in profile.
The rods should only limit her mobility by about 5 degrees. That is, she can't go quite all the way up or down or side to side but it doesn't effect turning her head at all.
This is Kenai right before surgery yesterday morning.She's not smiling so much now but she's doing great. Surgery went really well...8 hours long! Here's after surgery when she was moved into the ICU.
It looks like we'll be here about a week. We had heard two days from the ortho-surgeon but neurology's in charge and they are a lot more careful. It's hard to imagine a whole week in here. Hopefully they'll take out some of the more invasive "tubing" tonight or tomorrow. They took out her ng and breathing tubes before she moved to the ICU so we didn't have to witness that and she was not awake enough to remember. They removed the arterial line from her foot this afternoon...so a few down, lots more to go!

Sunday, February 17, 2008

Practicing for Wednesday

Izzy Stevens look out! That is one cute surgeon!

Another one Elliet took, she's inherited her Aunt Julie's talent!

Kenai didn't want to wear the mask at first, she'd rather give daddy the gas!

Channeling Doogie Howser

Big sister does the trick

Hmmm, that's a look of consternation if I ever saw one!

Wednesday, February 13, 2008

The Dish

Okay, here goes...
Surgery is coming up soon, February 20th. She'll go in at 7am and head into the OR around 9am. At Childrens they let us go as far as that with her so she will fall asleep while we are still with her. They also don't poke her until after she is asleep. She and I took a tour of the pre- and post-operative areas. She's pretty excited about riding down the hall on her bed with wheels.
They plan on being in the OR for about 6 hours. Kenai will be having spinal cord monitoring as a precaution against damage. The team who does this comes in from Philly Childrens. For this and many other "perks", we are SOOO grateful to be close to a hospital like Cincinnati Childrens.
In surgery (a cervical spinal fusion) they will go in the front and back of her neck to remove pieces of deformed vertebre. From one side (I can't remember which) they will then use titanium screws and hooks (I think) to help things straighten out. In this picture you can get some idea of what they are doing:

This is the same picture I posted back in November (I'm too lazy to drag out the scanner tonight) and the updated one is worse, even to our untrained eyes. Of course, you can tell that by looking at her. They took her most recent MRIs and used some sort of CSI software to make this 3D image of her cervical-thoracic skeleton. Really cool stuff. Anyway, on the left side of the picture are the bones that aren't growing and are actually acting as a tether. On the right you can see that the vertebre over there have kept growing resulting in what you can see from the outside...a lopsided head so to speak. They will remove the "tether" and two vertebre. They will purposely damage the bone just enough to signal the brain to heal it which helps the fusion. They also use some sort of gel (too lazy to go get the paper with the name of it) that stimulates that fusion process as well. Success is the bones fusing together which can take up to a year. Once fused, she doesn't need the hardware anymore but it's too big a surgery to remove it when it won't hurt anything to leave it there.
After surgery, she will spend two days in ICU. They say 3 days total in recovery as long as things go well. During this time, my mom will be staying with Elliet at our house. I have it on good authority that she'll be bringing us kielbasa one night! So my mom has taken off about ten days and my sister took off three days from work. We've had a lot of people asking what they can do and it's hard to think of anything. Just knowing that people are praying and thinking about us is a huge support. The only other thing I can think of is food cards...which of course I didn't think of until we were alone and I had no one to tell but Jedd! After we come home we'll be happy to have meals, although I'll admit, that's partially because I've been too nauseous to cook anyway!

This has been a long 7-8 months for all of us. The other night we were at Childrens ER to get fluids and medicine for Kenai who had a really bad stomach bug. I saw a woman walk in through the ambulance bay holding her little girl. I heard the paramedics say "suspected febrile seizure" and I looked at that mother's face and literally almost lost it. Even now I had to stop writing because everything got cloudy. Going through old journal entries and seeing what I was thinking after the first seizure. A lot of kids have a seizure and only half of them ever have another one so I was really hopeful. In those days I said a lot, "She'll probably never have another one, but if she does, we'll still be okay." It's one of those things I learned about God's provision and protection. We all know that bad things happen no matter what kind of person or what kind of X'n you are. Bad things can happen, and they do, all the time. The thing about trusting God is that you know it will still be okay when this stuff happens. I know He loves us even more than I love my own kids. As a parent I also know that I can't fix everything for them, nor would I if I could, and it breaks my heart. I think God feels the same way about us. A while back I hit a pretty rough patch of depression and my mom took the kids for a couple of days so that I could get better. When she brought them home I was terrified. It was hard enough to hand them over for four days because I couldn't take good care of them. The fact that they were coming back actually scared me. That's when I realized that I could never be a perfect mother. I could never even come close! I knew that even if I was "world's greatest mommy" I could never really protect them. That's when I asked God to help me. I gave them (back) to Him in a sense. I told Him, "Hey, there are ways You can care for them that I can't so they're Yours." As we go into this time, I know that we'll all be okay no matter what the physical outcome. Kenai's a trooper and, like all little kids, super resilient. I trust that she'll come through the surgery exactly as her (fantastic) surgeon has predicted. Even if it doesn't go as expected, she (and we) will still be okay.