Tuesday, July 14, 2009

GREAT News This Morning

*I forgot to mention that a few people have told me they have not been able to leave a comment on the blog. I have changed my comment settings to now everyone should be able to. Original post follows.*

*Original Post*
Isabelle was asleep when I got here this morning at 8:30. She had an ok night. They did have to give her some more morphine around 4:30 but otherwise did pretty well.

I spoke with Isabelle's surgeon about an hour ago. He did not mention if this new positioning is working better but I am assuming it is at least not making things worse because he did not change anything. So, the great news that all of you are wanting to hear...

1. The surgeon has decided to only fuse C3-C9. He will be taking a small piece of her rib out to use in the fusion along with screws and plates normally used for jaw bones in adults.
2. Because C1-C2 provide the majority of the movement in the head and neck, Isabelle will still be able to look side to side and nod her head to a degree. She of course will not be able to move her neck as completely as you and I can but she will have some range of motion. Most importantly when she gets older and I call her name she will not be able to use, "I can't move my neck," as an excuse not to look at me ;-) I know you can ALL see her doing that.
3. The surgeon has also decided to only fuse the posterior side and NOT anterior which means ONE day ONE surgery THE END. Praise GOD!

Now this is the PLAN. Plans can and do change. I of course pray that they won't (at least not for the worse) but I am one of those "I'll believe it when I see it" types of people so for now I will just be cautiously optimistic. From the beginning I have just prayed that I will leave this hospital with Isabelle alive and functioning but I will certainly take more than that if I can get it.

Everyone should keep in mind that the surgery is still no less dangerous and we still have after surgery issues to worry about like infections in the pin sites. Also, with any spinal fusion for any person there is always the chance the fusion will not work and the surgeon will have to try again (this is why Isabelle will have to stay at the hospital for at least three weeks post surgery). They will x-ray her neck periodically to make sure everything is doing what it is supposed to.

Also, although the surgeon will not be fusing the anterior side now it is likely it will need to be done later in life. There is no way to know when as it depends a lot on growth which is different in every child. The longer the better though.

Lastly, for those who want to see Isabelle today before surgery. The visiting hours are 830am-2pm and 4pm-6pm. I will be spending the 8pm-10pm hours with her alone. So if you want to see her get here before 6...please =-).

I will post again later on tonight and hopefully be able to put up some pictures and a really cute video I took of Isabelle last night while she was on the Morphine.


  1. That is great news! You and Isabelle are so amazing and I admire the strength that you have :) Me and Lori, Kerry and Jupie are coming at 1:00 today. See you then. Call me if we can bring you anything. 223-1468

  2. Great to hear the good news! You are both in our thoughts and prayers! We love you both!-
    WMC Staff

  3. Isabelle will be in our thoughts and prayers. It is the worst thing to hand your baby over for surgery. My son just turned one and has had many surgeries....cleft lip, palate, ears and tear ducts. We are healing from his soft palate surgery that was last Friday.
    Just Remember....GOD IS GOOD, ALL THE TIME!!! And with God all things are possible. Belli is precious and I wish you and your family the best. I will be looking forward to your update. :)

    Kelly sent me your blog link, just for the extra prayers :)

  4. she is in my prayers