Maddie left the hospital late Saturday afternoon…still not eating or drinking…the doctor realized she was on strike and nothing they were going to do was going to help the situation…so we went home with no feeding tube…but a GI reader that tells us how much acid reflux Maddie is experiencing…she wore that till yesterday and we should have some results early next week…Maddie got in the car and asked her brother for some food and drink…he happily agreed and we were on our way home…she is on another medication to help with the healing of her esophagus…it serves as a band-aid of sorts for her very tender tube! The result of this episode is that Maddie will have dilatations every 3 to 4 weeks…no matter what…so that means a long drive for her and me…and one very unhappy girl! She is eating slowly and very cautiously…and her spirit is a bit broken…she gave me the silent treatment until today when she realized life was trying to get back to “normal’…I do not blame her…but it does hurt…that she associates me with this…because I am the one that puts her to sleep and I am the one that is there when she awakes…little comfort when there is no other options…I do not want the hospital to be as familiar as it is…I hate that I know my way and I know faces…I hate the smells and I hate the flitting reality that they do not live with this…we do…that this is a members only club that is very lonely…Maddie is on mashed soft foods for the near future…so things have not gotten “better” just more of no other options…the doctors and surgeons conferenced about Maddie and felt this was the “best” decision…one that we agreed with…how can we do nothing and have her esophagus close completely…how can we go with any other option? When there is nothing to be done…our hope is that doing this aggressive dilatation regiment will break the strictures spirit and stay open…this is what we have hope…nothing more…that is hard when I like stats an facts…but to this point the only thing I have learned is that an esophagus can get angry and have a mind of its own…who knew
Monday, March 12, 2012
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Poor little sweetheart. Hope her spirits are up soon and that yours are too. Still keeping our fingers crossed for her that these next steps will do the trick.
ReplyDeleteThis sounds like such a rough time...Poor Maddie. And you know, kids always take things out on their Moms, but when they are down and hurt, their Moms are the ones they want right there beside them. Maddie wants you there when she has to go under and when she wakes up...She knows you love her. Hope things get better and this procedure works. I think of you often.
ReplyDeleteIts so hard! I took care of a lot of kidos where we had nurses and aids help hold kids, so parents never had to be associated with scary stuff. Although just being in a hospital is hard to take the parent out of the equation! Hopfully she starts to do better soon!
ReplyDeleteI am so sorry for all of this. Maddie will bounce back quickly once the routine of life comes back. She is a tough kid to go through so much at such a little age. But, she has an amazing mom to be by her side, and she knows it! I will be praying for that angry esophagus to stop it and be happy. Hugs to you all...
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