Monday, April 15, 2013
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.
Sunday, April 7, 2013
Oh my what a roller coaster this week has been. On Thursday lexi started to bleed a lot from around the g tube. more than iv seen and more than just from from the skin being rubbed on. So when I got home I called her doctor and after telling him it was still bleeding and she was in pain he told me to go to the hospital and that he would have her be admitted and we would get the g tube out and put the mic-key button in depending on what he finds in there. So we get to the er and they take us right back. well when the er doctor came in he told me there was no reason to be admitted and that he wanted to change the tube right there. i told him under no circumstance was he taking out her g tube and that he better go call her GI doctor. So then to get back at me the er doctor told her doctor that it wasn't bleeding and that it was just to close to her skin. So her doctor decided based on that not to admit her. The er doctor came in and had 5 other nurses hold lexi down and pulled her tube away from the skin. All of this took 5 hours which was totally unnecessary. Then Friday the doctor called and said he wanted to get her tube removed this Monday. Well medicaid said no so now we have to wait until the 15th. Its just stupid that she has to go through so much when its unnecessary. Plus on top of it all lexi has decided that 3 am is a good time to wake up and stay awake. Honestly what child wakes up at 3 and is ready to play lol. During speech on Friday her therapist decided that because lexi isn't progressing as well in verbal language that it is defiantly time to start teaching lexi to sign what she wants and needs. I'm impressed to say that after one session of teaching her animal signs she knows how to do them pretty well.