Tuesday, August 25, 2009

About the Appointment...

It didn't go so well.

We found out today that Isabelle will need another fusion within the next week or two. The part of her spine that was fused originally looks great so that is good news. However, parts of her spine that were not fused are not lining up as they are supposed to. I will try to explain it the best that I can but if you have questions please leave me a comment.

In case you don't remember in the first surgery C2-C6 in the posterior were fused. As I mentioned before we left the hospital and again when we went for an x-ray four weeks ago the front part of C2 and all of C1 looked like they were curving the wrong way and we were told that another fusion was likely...we just weren't sure when. The main problem now is that the front of C2 is not connected to the back part of C2 so it's just sort of floating around in her spine. The x-ray today showed that since the x-ray four weeks ago this abnormal curve from the front of C2 and C1 has gotten worse even with the halo on. Her surgeon made some adjustments to the halo to push her head back and then took another x-ray. These adjustments helped for the time being but she will not be in a halo forever and it is not a solution. The fact that just him moving her head around and making adjustments to her halo is just proof of how unstable her spine is and how much another fusion is needed.

Now for the hard part. There are two options that the doctors and myself need to decide on.

First, he can go in and fusion a few of the segments in the anterior and hope that that works. This will leave Isabelle with some motion in her neck. It may work. It may not work. It could work for weeks, months, years, or not at all. If we do this surgery and realize later on down the road that it did not work then he will have to go in again for a third time and fuse the back all the way up to the skull leaving her with no motion in her neck. There is no way to know if it will work or for how long. However, her surgeon said that if he had to guess he would say there is about a 50/50 chance that he would have to do the third surgery. So the down side is that this surgery may not work and she will likely have to go through a third surgery at a time that no one could know. The upside is that if it does work Isabelle will still have some motion in her neck.

Second, he can go in and fuse the back of her spine all the way up to the skull now. This will straighten her spine and it is unlikely that Isabelle will ever need a fusion on the front part of her spine or any part of her C-spine for that matter. The down side is that Isabelle will no longer have any motion in her neck, ever. The plus side is that if she makes it through that surgery that will likely be it. She may need more surgery in the distant future to repair the fusions that have already been done (they start to wear down over the years) but it is unlikely she will need another one as a child.

You see the dilemma?

So, a decision needs to be made and I would appreciate it if all of you would please pray that both the doctors and myself are able to make the right decision and to know what is best for my Belli. This will be a very difficult decision to make and I certainly need the prayers. Also, regardless of the decision that is made she will be having a second fusion very very soon and it will be just as risky as the last. Please continue to pray for her to be safe and for everything to go well. I will let you guys know as soon as a decision has been made and the date of the surgery.


  1. Wow! You are in a tough spot! I will pray for your wisdom and discernment, and for strength to make the best decision for your daughter. I will pray for her future surgery, that God will guide the hand of the surgeon, and that she will heal properly.

    I just found your blog through MckMama's forum..and I read it on Five Question Friday.

  2. Oh Belli! and Amanda!! Prayer, Prayer and more Prayers are sent your way. I am glad I found your blog. I wish I could help more with this decision just by listening and lending support. We will continue to pray for miss Belli and the medical team that the right decision will be chosen and that the surgeon will fuse the bones correctly with good healing and strength for the two of you. I will add her to my tuesday night girls group prayer list as well. Big hugs and love.
    Bridget and Brianna!

  3. I thank God for your strength and I pray that God shows you what is the wright thing to do for Isabelle. Love Ya, Aunt Linda

  4. Oh Amanda, I am so sorry. Bless your hearts. You are in my heart and prayers. It's all in His hands and the both of you are too. May he bless and keep you both. Love, Amy

  5. I hate to hear this bad news, but good news is you do have God on your side and He will not let you down, ever! My prayer is for Him to make the choice very clear for you. I love you and Belli and am confident things will turn out for the best! Lots of prayers will be sent up for you guys, as they arleady have been :)Love ya, "Mandy" :)-Ashley

  6. Amdanda: Please know we love you both very much and are here (always) praying you through this. May the Lord grant you peace, strength and wisdom as you make your decision.
    Love Aunt Karen and Uncle John

  7. Praying for you guys! I'm sorry you are left with such a tough decision!

  8. Amanda: You guys are in our thoughts and prayers for wisdom for you, the doctors and for a peace about your decision. Please let me know if you need anything!

    Doug, Kelly & Katy Fleming