Monday, April 15, 2013

how do you get doctor's to listen

First of all I wanted to say lexi got her mic-key button placed and it went well. shes back to being happy again. ok now onto what i want to say today. most of lexi's life i'v had to fight to feed her. in the hospital when she was born she wouldn't eat and wanted to sleep. i got yelled at by a nurse because it was over 6 hours between feedings. she lived on formula until she was close to 9 months old because she despised baby food and would refuse to open her mouth. after that she still liked formula to food. shes never been a good eater. she rather just sit there watching everyone else than eat. she got her gtube not because of eating but because of her need for meds and her refusal to take her meds. only reason we even met with a gi doctor was because her developmental pediatrician knew she needed her meds. when we met with the gi doctor they blew me off with any concerns about her eating. i told them she wont eat and that its a miricle that she got up to 35lbs. most of that weight comes from milk honestly. instead they put the g tube in just for medicine purposes. when she got the tube i did research and started bolus feeding. the doctor still wont acknowledge that i bolus feed. he said good job that i learned but nothing more. he went so far to tell me to just hold her down and give her meds forcefully. one i feel like a failure because i cant make my child eat and two i feel like they don't listen to me. i like her gi doctor but im beginning to think he either needs to listen to me or i need to find one that will listen to me. shes been 35lbs for a yr and a half and just wont gain no more weight. i guess its good shes stable but i thought that she should be gaining at least something. her sleep specialist is the same way. because she wont wear a c pap they said there is nothing else to do for her. i know there is something someone can do to help her central apnea and to get her to sleep thru the night and not wake up numerous times at night. its like because shes not diagnosed with a syndrome they don't want to help me.

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