Wednesday, January 30, 2013

Turning Points

If last week was a turning point in that I had to stop ignoring the fact that Jaedyn isn't getting better, this past weekend was a turning point in accepting that supplementing her and not treating her was not going to make her better.

On Saturday, Jaedyn got all dressed up for a tea party she was invited to with her friends.  The girls were so pretty in their fancy dresses and makeup (my girls).  Their two friends came here and we took pics together.  After about 5 minutes of the photo shoot, Jaedyn needed to go lay down.  This has been happening whenever they do anything - take a walk, shop, etc.  She gets tired out quickly.  She has been needing to sit or her stomach hurts.  I found out on Sunday night that she had gone to McDonald's on Friday and had some french fries and a shake.  This may have been the source of her pain.  Seeing her so thin in her dress up clothes, hurting, weak, not able to was breaking my heart.

After dropping her off, I cried in my car.  I realized the time had come, we had to do something.  I talked with Jaedyn about her treatment options, which for me right now seem to be prednisone (very effective, but many side effects and often symptoms return after weaning off of it, so has to go onto another heavy duty med), budesenide (a steroid, not as successful but less side effects), or EEN (exclusive enteral nutrition).  EEN is a full liquid diet of a special formula (many to choose from) either by mouth or by NG tube.  As Jaedyn cannot even down three cans of her Ensure a day, it would be near impossible for her to do 6 or more a day.  After we watched a video of a little girl showing Jaedyn how to do it, she decided that the NG tube probably would be a viable option.  She would have to do this for 6-12 weeks continuously, then slowly start regular foods again when all of her Crohn's symptoms have subsided.

I wrote Jaedyn's GI specialist an email and she called us on Monday night.  She is in agreement with this plan and will call our pediatrician when she gets a formal plan written up.  I'm still waiting to hear from them.

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