For some reason I read through some of our posts from before Gracies hospitalization, and I have such strong feelings of disappointment, saddness and worry. All that keeps going through my mind is how did Gracie end up here. All the times my intuition was telling me something wasnt right, worried that things werent working how they should be, all of the phone calls to milwaukee and the advice and at times the encouragement that things were working, as long as she has output she cant get impacted. So how in the world did her entire Colon end up being completely impacted? I feel like I am losing my hope in her cecostomy, that I wont have the positive thoughts when she has those successful flushes, and I will be back to being worried every single night. I have worries that there is more wrong with Gracie than what the doctors are finding. Does Gracie have an underlying medical condition or disease that is causing her chronic constipation? I feel like I need answers that no one is able to give me to my questions. I do feel the doctors that Gracie sees are doing all they can do and are helping her in everyway they can, however, they are honest, Gracies situation is the most complicated they have seen, I dont want to hear that anymore. I know its complicated, so what do we do to help her. There has to be something better than what she is getting and Im exhausted from watching my baby girl go through all of this. Her cecostomy journey has has made our family grow, we now have a whole ostomy family that I love so much who have given so much support, advice, resources and love, that I am thankful for. I have been talking to a couple of them the last couple days and Im going to try to sort out what I do from here. Sending medical records possibly to a couple different places for review. If any of you friends, family or my ostomy family know of any places I could check into or resources please let me know! Because at this time the medical diagnosis and treatment just isnt good enough for my Gracie, and Im her mother and I will be her advocate. Time for me to follow my intuitions and not rely so much on the doctors advice.
Posted on: Thu, 01 Jan 2015 04:00:48 +0000
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