Thursday, February 18, 2010

Kaela's first surgery

It's been just over a week now since Kaela had her fusion and decompression surgery. She's doing really well considering all that she has been through. They fused Kaela from occiput (base of the skull) to C2 and did the decompression by shaving down the back of C1. Her neurosurgeon said there is a very obvious indentation in her spinal cord from C1 pushing into her cord, and that once he did the decompression they could tell that C1 and C2 were very unstable, so it's a good thing we did this surgery now. We knew before going in she had spinal cord damage and from the pictures of her CT and MRI that C1 and C2 looked unstable, but it's hard to tell just how bad anything is until you get in there and look at it. They placed some hardware (screws and rods) as well as a bone graft from her right hip to fuse it. They were also able to use some of the bone from the decompression of C1 in the fusion. The halo is placed on before they even start the surgery. This took them almost 4 hours! Bones in people with MD (as is the case with most forms of dwarfism) are very different, but also have a different texture to them. Her forehead has a ridge that sticks out a bit and they had a hard time finding the right spot to place the halo. They also said her skull is very thin, so we have to be extra careful, as in no falls. They put a total of 12 pins in her skull. If you are not familiar with this, that's a lot. In an adult they typically put 4. In a smaller child they tend to put more, maybe 8...Kaela, again, has 12!! They are a little worried about the possiblity of infection because she has so many pins in, but we are going to hope for NO problems. More pins, higher risk for infection. We have to clean them once a day, which is actually not too bad. I was worried about this part, but for me, it's not too bad. Kaela on the other hand does not enjoy this. It's 50% hydrogen peroxide mixed with 50% saline solution, so it probably stings a bit. William likes to tell us every night that this hurts Kaela and we should really stop doing it. Such a good big brother. We just tell him that it probably doesn't feel the best, but it's to help Kaela from getting sick, so we have to do it. The next thing he usually says is "well I don't have to do it, right?" Poor kid is all worried he's next.
Kaela's surgery took just over 7 hours total. We were able to see her about 9 hours later. Seeing her for the first time was hard, because she really didn't look that great. She was VERY white, bloody and incredibly puffy. She was also hooked up to a lot of things, which was probably good! She touched at her halo a few times, but we just kept telling her that it was okay and not to pull on it. I was really worried that she would be really angry and tug at it, but she actually did really well...of course! She will have to wear the halo for 3 months.
Kaela was sent to the PICU the night of her surgery and was sent to the regular floor about 24 hours later. Increadible! She didn't move or want to move a whole lot during her stay in the hospital. Although she did better each day, I think she was still having some pain and the halo is very top heavy. They brought her a wheel chair and I was able to take her for a walk on the 3rd day. She hated getting in the chair, but was happy to go for a walk. Kaela's surgery was on Tuesday and she came home on Friday! Again, really amazing. She was so happy to come home. We dopped her up pretty good on meds before moving her around to bring her home, so she was very happy. She was on a constant morphine drip from Tues-mid day Thurs. and after that just took oxycodone as needed by mouth. She was a nut on that Oxycodone! She was super happy and a bit crazy. She thought it was hilarious to try and bite your finger and smack your face, but at least she was smiling.
Unfortunatley, the carseat we have (Britax) does not work with her halo since the straps can't go thru with her halo there, and the hospital car seat did not work either. The only alernative they had for us are these buckles that you pretty much buckle her into, lay her on the back seats of the car, and buckle her buckles into the seat buckles. It's obviously not the safest solution so we are stuck at home other than going to doctor's appointments. As of now, this works out okay because she can't even sit up on her own yet. Kaela has had poor muscle tone pretty much her whole life, so this doesn't help too much. They told us not to let her walk for fear that she could fall and loosen her pins or even knock one (or more) out. After they found how thin her skull was this is an even bigger concern. So far, this hasn't been a problem. She spends most of her day laying on the couch or sitting with pillows on both sides to help support her. Each day she wants to do a little bit more, which is great. We've sat on the floor with her to paint, play with playdough, and play with these awesome wooden cupcakes that you can actually color (using the 'icing' tube) thanks to Aunt Rachie. I think her hip incision bothers her the most out of everything, but over all she is doing pretty good. We are finally getting a little sleep. That's actually probably been the hardest part, no sleep :) We are just so happy to have her home and smiling!
We have had so many people visit during our stay in the hospital and at home and just feel so lucky to have such a wonderful support group near and far (including people we haven't even met in person). Your good thoughts, prayers and well wishes have done their job with helping Kaela get through this and helping Matt and I know how many people out there care so much. It means so much to us and we are forever grateful for your messages on facebook, your visits to the house, to the hospital and the packages that keep coming in the mail!! I've taken lots of pics and am printing lots things to show how loved she is, when she's a little older!! A special thanks to our parents for helping take care of our little man during the hospital stay. William had his first over night with my parents 2 nights in a row while Kaela was in the hospital, and that was a HUGE help knowing he was being well taken care of and loved while Matt and I took care of Kaela. Our parents were a huge help during the days and nights and it means so much. Another very special thank you to our wonderful friends Alisha and Bob and their girls for everything they have done. They also helped watch William, made us food, came to the hospital several times, and were there when we needed someone the most!! Alisha spent almost the entire day of Kaela's surgery at the hospital with her 2 year old just to support us, then took Will home with her so he could go have some fun. We appreciate you guys so much! My grandma and grandpa also were at the hospital from about 10 am until after 7 pm! I made sure they were able to see Kaela before they left having been there so long. I feel very lucky to have them as my grandparents!!
Megan, Vicki, Traci, Andy, Ms. Julie, thank you all for spending time with me at the hospital too!! Means so much! Katherine, a big thanks to you for all the clothes you've put together for Kaela!! Those that have sent emails, left messages, brought us dinner, again, thank you so much!! There are so many of you, and our hearts our filled with love! All of these things, big and small, make a hard time a little easier!!

There is major picture overload below...sorry, but I don't know how to do a slideshow and I really wanted to document all the stages thus far.

Daddy giving hugs before she went back
We flipped a coin to see who would take her back. I won with tails. Kaela was loopy from the meds they gave her before taking her back and she thought it was hilarious that I was dressed like that.

William and I in the waiting area
Matt's parents (Grandpa is sleeping I think :) )
Grandma, Alisha and Will
Friends Vicki and Megan came for a visit while Kaela was in surgery
Alisha and Bre helping pass the time

These are the pins. There are 3 in 4 separate places. They don't look too bad..I think it helps that they are white rather than metal.
Grandma and Grandpa (Kaela's great grandma and grandpa) seeing her in the recovery room after a long day of waiting

First night...long day!
First time sitting up and NOT happy
Blowing bubbles to help those lungs
Alisha brought her a million things including her favorite...chapstick!!
Grandma and Kaela

Grandma and Grandpa
Alisha with Mommy and Kaela
Megan and Kaela
Traci and Andy with Kaela
Mommy and Kaela
Bob and Kaela

first time in the wheelchair, she was not happy about getting there.
This computer that at the hospital worked great for Kaela's videos

2nd time I held her

This is her seatbelt
feeling a little happy

Getting ready to get out of here! Happy face from going home and strong meds
new toys

First day home, playing with her cupcakes (she was still loopy from the meds so sitting and playing was okay for the time being)

Kaela coloring on her color board

Kaela's first trip to her room with Grandma Liz..playdough makes everything okay
Grandma, Kaela, Will, Haylee, Bre, and Alisha in Kaela's room playing
Kaela sitting up in her wheelchair at home
Kaela's best friend, Bre helping her out

Watching movies on the computer, because sometimes mommy and daddy need a break from Dora and Spongebob :)



Grandparents on my dads side

My grandparents on my moms side

10 comments:

Jennifer said...

Oh Sarah and Matt! I don't even know what to say. I wish I was closer because I'd be there helping out too! I love that little girl and send her all my hugs and kisses! She's very brave!

Jillsblog said...

Damn, you have good friends and family. I wish I could help you out as well. I would take Will in my daycare and help you out. Best wishes to sweet Kaela...she looks great!!! Hugs to all of your family...Jill and JD

Kasia and Amelia said...

We wanted to send our best to Kaela.... she is our inspiration and our hero! What a brave, wonderful, beautiful girl she is..... Amelia also had decompression surgery but it was only decompression and much easier.. You guys are awesome! No wonder that you are surrounded by loving family and friends. What a wonderful support. Please keep us posted on Kaela's recovery. We pray that all the troubles and pain are gone forever! Love, light, and healing from Kasia and Amelia

Jaime said...

What an incredibly family and group of friends you have there! It's such a comforting feeling to have then when you need them the most. I'm so glad that Kaela is doing well now that she's home. Please keep us posted as to how she's doing.

Ps - I talked with my friend Ericka and she knows a family who's young daughter was in a halo. She's going to contact them and ask what they did for the car sear situation. I'll let you know when I hear from her.

Destini said...

Kaela is such an amazing little girl, so tough! You guys are so strong and so lucky to have such great family and friends! I'm glad that Will is so worried about Kaela and handling everything so well, Taylor has started asking some serious questions about Trace's upcoming surgery and is very mad at us right now that we are not letting her go to Baltimore with us. Hugs to you all!

The Wymer Clan said...

What awesome friends and family you guys have! Glad to hear that Kaela's doing as well as she is, she's such a brave girl with all of this! Here's to a super speedy recovery and to Kaela getting out of that halo in record time!

Melissa Swartley said...

What a fantastic bunch of family and friends you have! I'm so glad to hear how well she did and that she is now home sweet home! She is such a brave sweetheart!!! Sending you all big time recovery hugs!!!!

Greene Family said...

Kaela - are so amazing and so brave!! I'm so happy to hear that her recovery is going well! Hugs to all of you! You are blessed with incredible family and friends, and Will is an awesome big brother! We are keeping Kaela in our prayers for a continued speedy recovery!

Kim said...

sending you a lot of VIRTUAL LOVE! I wish I could be there to help you. But please, if there is anything you need, let me know. I'll send it! Kaela is a dollface. She is so strong willed and she will be a-ok. Most kids would have been tugging at that halo. She is an angel. I am sure your heart breaks watching her in any sort of pain, but I know you know this will be for the best. Porr Will thinking he is next (he is such a good big brother-kudos to him too)! Just know I am thinking about you daily.
Love and hugs!

Anonymous said...

Hi I am 22 and also suffer from Metatropic dysplasia I wish Kaela the best of luck as she will need it. Having this disability is very challenging as because I tend to look like a child and people tend to assume that I am one which is very frustrating, also going through middle school and high school may also be challenging for your daughter as people tend to place people with disabilities into an outcast group which is also very frustrating, but I am now in college and just got my license using a vehicle with handcontrols for modifications and am about to move out on my own. I hope my store will help you in helping your daughter Kaela lead a great life. Good Luck Nadine