August 23, 2011
almost out
Ohh, I want to scream and cry. I am so exhausted. Hospital stays alway end up doing that to you. We will hopefully be out tomorrow to go home. He is only going home on a 800 calories instead of the 1200 he was on. Don't know how "permant" that will be, but I just hope he can get back the weight he has lost and on top of that maintain his weight and not loose. He was maintaing with 1200 so 800 makes me nervous.
Supposably the GI dr. agrees he needs to go for "further" testing at a different hospital to figure out what going on with the GI part. and The hospitalist agrees he needs "further" help with the rest of his issues. The GI dr. said she would get info to us by tomorrow on where she wants us to go and will get started w/ paperwork. and The hospitalist supposably is just going to give us names of places and drs and leave all paperwork ect... up to us.
I pray that things will actually be on the road as they say, but so many times have been told they are going to do this and then nothing happens. I am running out of fight, but I will NEVER STOP fighting for my son. We have no finances to get us where we need to be but I will never stop trying to get him where he needs his help. If we wouldn't have been fighting for him the past almost three years he wouldn't even be alive probably today b/c drs didn't believe us on alot at begining.
I ask God all the time if we are suppose to stop and settle for him being a mystery child and just settle with how things are right now in cj's life. And God is still telling me to keep fighting. So, I keep praying and fighting. Praying is all I left to keep me going and have the energy to survive for my son and family.
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Hugs to you and yoru family i know all to well how frustrating this all can be.
ReplyDeleteKeep praying my dear. Your plight sounds so much like mine many years ago. When Dr's don't believe you, you must show them proof with lab tests by other facilities or specialists or visit summaries. Keep a log book of symptoms of vomiting, diarrhea, stomach cramping, any bleeding, mucous (indicates allergies or general inflammation). Get all his medical records and place them in a book, placing all recent tests, visits, labs at the top in chronological order.
ReplyDeleteGod will make a way even if you can't afford to go elsewhere. Pray hard! I know you are exhausted and overwhelmed but please don't give up. Your son has no one but you as his advocate on earth. Don't allow the Dr's to belittle you or make you feel crazy. It is their job to figure this thing out and there are plenty of Dr's out there if one of them fails your son. On my journey, I've had some Dr's apologize and some that cared more about their pride.
I don't understand why your GI would take away caloric intake if he can't maintain weight. Sound strange.