Relief was Short Lived
I'll try to spare you all the dramatics of my last 24 hours. Simons diarrhea, stomach pain and raw butt have returned with a vengence. He started stooling more yesterday and by the time I changed diaper number 11 I knew it had come back. We stopped the steroid after day 6 and that seemed to make all the difference. I don't think the pulmicort is helping at all and I hate to think he will have to be on steroids to control this. That is a drug that is not good long term and through the first transplant he was on major doses of it so I was glad when this time around he was steroid free. I had a major meltdown at 3 am screaming to God why, why why? I just don't understand why one little boy and his family have to endure so much. I think the sleep deprevation is really getting to me. There is nothing more to ask but for prayers of relief and quick. Simon is very droopy today just wanting to watch tv and I think I'll join him and try to catch some sleep before our webinar at 12:30. I did call the doc this morning and asked him to page GI and consult on what to do next. I don't know what more to do. Please pray for relief. This is our major issue now and it seems to go from one major thing to the next without a break in between. Its really hard on us all. It breaks my heart to see simon endure so much. You can tell when he feels pain because our spirited, happy all the time boy is sad and that really hurts me. Thanks for sticking with us. Please continue to pray. God Bless. Tracy
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