so, not a good day yesterday for poor Maddie. We have been noticing that her stooling is getting less frequent these last few weeks. have been keeping a close tab on it and trying to do what we can to keep things "normal". Last week we had 2 different stretches when she went 3 days with no poo...not a good thing at all for her colon that is supposed to be faster then normal since the surgery. Talked with Dr. Levitt on Monday and he was concerned and asked to see an xray of her belly. After he saw the xray he confirmed that our worst fears were right and that she was accumulating stool in her colon. So here begins the cycle that we had so hoped we were moving away from. Madison had to have a 300 cc enema last night and now we will start again on the ex-lax daily. We will repeat the xray on Friday and see if she is all clean. if so we will continue daily on the meds. If not we will re administer an enema and up the dosages of ex-lax. UUGGHHH...
Last night Jed was getting all of the stuff together for the enema. I had not told Maddie what was going on as it just causes unnecessary anxiety for her. I took her in the room and she was asking what I was doing... when Jed came in the bathroom and she say the enema bag in his hands she looked at me with the most heartbreaking look, with eyes that cried out "help me mom". She just looked at me crying waiting for an explanation. It was all I could do to talk without falling apart. I explained to her what was going on and why it was so important to stay empty to avoid even bigger problems.
She continues to amaze me with her strength. After the bad part was done we were all sitting in the bathroom with her on my lap waiting the awful 15 minutes for the enema to take effect. She looked at me with a red, tear stained face and said "mom it didn't even hurt that bad, it just scares me". How could it not scare her? I hate that we have to hold her with all of our might to even administer the dang thing...she is physically so strong. After all of these years she knows how to fight off the ones that are coming for her with any medical equipment!
So please continue to pray for this sweet little girl. Pray that we do not get back in a bad pattern with her, that meds can stay at a very low dose and that she will start to really get full bowel recognition.
We appreciate all of your prayers for her!