Sunday, December 23, 2012

maybe g-tube

well the nurse practitioner called me back friday afternoon and said there's really no other solution to lexi not taking her meds. I of course got frusterated and asked her how in the world is it safe for my daughter to be able to continue to keep having seizures because she wont take her meds. she said that they are not used to kids who flat out refuses meds like lexi and that the only option is to either find a new speech therapist who works with oral adversion or do something drastic like an iv or g tube. im so ready to say just do a g tube because lexi isn't overcoming her sensory issues in her mouth and plus the fact that she has horrible behavior issues it just makes sense to not fight with her any longer. im sick and tired of doctors not wanting to deal with my daughter because shes difficult. how can a doctor even do that. and its not just her neurologist or the nurse practitioner at the neurology center. its the sleep doctor who refuses to order a c pap because he doesn't want to deal with her not wearing it. how can that even be right. shouldn't she at least have the chance to get a good night sleep. she has central apnea and obstructive apnea to where she stops breathing but because shes difficult they don't want to give her the good night sleep she deserves. i just pray they do something about her meds. she needs to have her seizure meds and she needs sleep

2 comments:

  1. When Matt was younger he didn't sleep. It was awful! He now sleeps and there isn't a night that I don't praise God he is sleeping.
    I love Matt's g-tube, it is amazing. I have to warn you though it takes a lot of time. And if she really hates it she might pull it out a lot. Matt doesn't pull his out, he never has, he is very sensitive of it, hates me to touch it or clean it. I try to point out positives as much as I can and it makes it easier.
    We had to force Matt to take meds for years. It was a two person job. One of us would hold him tight, or wrap him in a very tight swaddle and the other would pry his mouth open and drip it in a little at a time so he would swallow it a little at a time. We got spit on vomited on etc. There wasn't a medical professional that we ran into that we didn't ask for suggestions on how to get him to take meds. I didn't even know in some cases they will put g-tubes in, I wish someone had told us. I got to the point I wanted to start asking for it in shot for, giving him a shot would be better than the battle.
    After years of this for most meds it did get better. Before Matt got his tube he got to the point of taking most of his meds with out a fight.

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  2. Pre-g-button, we had to give her meds that were either in suppository form or get them compounded into a suppository or transdermal kind. It was very limiting! The g-button has been the best thing we ever did for K. If you go to my archives of October/November of 2008, you can read about how we struggled with it and how much it helped after placement.

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