Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, February 17, 2011

Decisions made

The title of this post makes it sound like we had a choice as to weather or not Axel needed surgery. We knew going into this, when we first found out a few weeks ago, that there would be no choice. Axel needs repair the instability in his neck.

Dr. Samdani showed me from the MRI we had done a couple weeks ago where the problem is. (and I had seen it myself, since I downloaded the program so I could look at the scans myself. LOL Those who know me will not be surprised by that.) There is an area where the C1 vertebrae is pressing against the cord, interfering with the Cerebrospinal fluid (CSF) That means the CSF in the brain is low as well. It's unusual that Axel hasn't complained of headaches at all...that we know of since how would he tell us?

The biggest question is what do we do with his TEETH? 

Dr. Samdani, the surgeon, confirmed what I was thinking. They do NOT want ANY type of infection in his body when they do this surgery since it would put his brain and spinal cord and  at risk.

We need to get his dental work done as soon as possible, using fiberoptic intubation (I didn't know there was such a thing!) Surgery to have his spine fused can be done 4 weeks later. So, the very soonest we'll be looking at doing his spinal fusion is the end of March.

There is  GOOD NEWS too! When the little kids have this done, they usually have a piece of bone taken from the hip, which is used to screw everything together since there isn't enough bone otherwise. Because Axel is older and has more bone, they will probably be able to use synthetic bone replacement (I can't remember the name of it) which makes for a faster recovery. 

Also, with little kids they are usually in a traditional halo with pins in their head for 6 months.  This is because they don't have enough bone to support all the screws and hardware. Because Axel is older and has more bone, he will probably not need a traditional pinned halo. The doctor said he won't know for sure until he gets into surgery and can actually see the bones for himself. So, Axel will come out of surgery either in a traditional pinned halo, a non-invasive halo (it is MUCH more comfortable for the child, and doesn't leave the scar from pins, but is more of a pain to care for the child because you can't even wash their hair.) or...the best possibility...just a neck brace! 

If he has to have the traditional halo, it will only be for a few weeks and then he'll be switched to a non-invasive halo or brace which will stay on for 6 months. 

Oh, and Axel got a new brace today which looks much more comfortable for him. 

So to wrap it all up:

1) Get dental surgery done at home using fiber optic intubation.
2) Do neck surgery in Philadelphia.
3) intensive care for 2-5 days after surgery, then in a regular room for several more days. "Home" to the hotel for about a week before returning home to Minnesota. 

Now, we're going to go find some dinner, and try to get rid of the migraine I have. Please pray tomorrow's flight home is uneventful. My migraines usually last 3 days, plus the ear trouble I have flying. Oh....Please Lord, work a miracle on my head!


Laurie said...

Praying for good appointments and for a miracle for your head!!

jjpsmommy07 said...

fiber optic intubation....never heard of it. we were just told that Jonathon has to have surgery for cleaning xrays and fillings. we are waiting for paperwork

Bethany said...

Yeesh. I can't wait to get him started on JP, or did you start him on Angela's? We have a new periodontal study coming out ... I swear, it is so awesome.

Jackie said...

Leah, no wonder you have a migrane. You've been a super woman for 2 months straight. Super woman can do anything but sometimes they need a moment to BREATH. So glad to hear the good news, best of luck on the flight home. {{Hugs}}

The Ironic Catholic said...

Very cool that you've all got a plan (and he's wearing a friendlier halo now). Good luck and prayers for the flight back....