Tuesday, January 08, 2013

So...

Carter is going to have surgery in March.
Since making this decision I have questioned it any time my brain relaxes enough to think about it.
I don't know if it's the right path.
Here's what I do know:

*There is an area in his intestines that will not clear up.  Last summer we tried an intensive steroid that was designed to target such an area. It didn't work and although the spot looks a little better than last year Carter still has cramps.

*Carter would rather have the surgery than to ever have to get another small bowel follow through.  This is an imaging test that he's had twice wherein he has to drink a bunch of barium so that the radiologist can get a good view of his intestines.  Barium is extremely gross.  I have never tried it, but I have watched Carter drink it (which normally consists of him drinking a bit, then throwing some of that up, then drinking some more, etc...)

*The doctor told me that he has seen some new research that says if that area continues to give you problems, taking it out might be the best answer.  And the nurse at the pediatric GI's office said that kids seem to do really well when that area is removed.

Here's what I am unsure of--the questions I am having and the hopes I have for the surgery:

*The cramps aren't horrible, but if there is still active Crohns in that area, how long until enough scar tissue builds up so that we need to get it removed anyway?

*I am beginning to think that Carter hasn't truly felt good for at least 2 years, if not more.  I think he probably has cramps all the time, there are just days that they are worse than others. I don't even think he remembers what it's like to feel really good--and he doesn't really realize that.

*If he is responding so well to the medication overall, with just this small area bothering him, this surgery should fix that and then hopefully he will rebound really well and make it through high school and maybe even college without an issue?!  Maybe?

Overall I feel like this is really the right thing for him, I just feel really fragile about this decision for some reason.  Mostly because the day of the consultation might also be the last day of rotary basketball for Max's team (the tournament is that week, with games being planned for Thursday--March 7, also Carter's birthday--and Friday, the day of the consultation).  I think I need to be at the doctor's office, but why does that make me feel like I am picking Carter over Max.  I think it's the situation I am picking and if it was Max I would make that decision also.  Plus the week before this Max will be my sole focus due to the fact that he is in the middle school play here (part of the sea chorus--the are doing Little Mermaid Junior) and that weekend is the performance weekend.  I do have a few people who would sub for me as a coach though.

I just don't want to spend the next 7 weeks worrying about these things--make that 12 weeks because his surgery is tentatively planned for March 29.

Blah.

Oh, and Carter broke his hand over break playing basketball.  It's a small break but still.  One more thing!

1 comment:

Anonymous said...

Oh, Jana...thinking of you....and your family. Appreciate the update - just wish it was better news. Surely the consultation will be revealing and set your mind more at ease. We all do whatever possible if it can potentially can help our children. May time calm those thoughts running through your mind. :)