Wednesday, November 26, 2008

So we had a little scare with Brynlee last weekend. We are trying to switch her formula from similac to an amino acid formula. SMA kids burn more calories at rest then the rest of us do. First off let me start by saying that we already had her switched but her formula is backordered until next week! Way to go Vivonex people you deserve a swift kick in the BUTT!!! By the way anyone who wants to complain about the cost of formula again stick your kid on vivonex for a month....yikes that smelly gross stuff is like 4hundred $ a month. Thank the skies for insurance, lol. Ok back to the scary popcorn. So I fed her twice with straight vivonex, by the end of the second feed she was wretching and gagging with tears coming out of her eyes. So she is sitting there trying to throw up and she can't. Those who don't remember she had a nissan which is where they wrapped her intestines around her stomache so that she doesnt have acid reflux anymore. Well she can't throw up or burp anymore. So she is sitting here doing all of this and I am venting the hell out of her and throwing a couple of ounces away. I go and grab her pulse oximeter because she was starting to not look so good. I get it on her and her heart rate is 183 to 200! Normal for her is 100 to 130.
So I call her doc and while I am talking to her Brynee starts to close her eyes like she just wants to sleep. Brynlee never does that unless she is in her crib. So her doc tells me it is just from the formula and that we are going to have to start her off a lot slower. She told me to let her go to sleep but to put her bipap on and to leave her pulse ox on. So I went and put her down but decided that I needed to hold her. So she is sleeping in my lap and her hr is still high and her oxygen starts to drop even with her bipap on. Her oxygen levels are normally 97 to 100. She dropped down to 92. So I am just holding her crying my eyes out thinking oh my god this is it, how did this happen?!!! I call my doc and she tells me to calm down she really thinks that once it gets out of her system more her heart rate will come down. Well she was right after Bryn woke up her oxygen came back up and her hr slowly started to drop. So we are going slow with the formula and she is doing great! If I didn't think she needed this formula I would take her off of it asap. It is already broken down though and she doesn't have to work to break it down. She has already gained almost three pounds since she has been on it. She is able to move more to. She isn't using up all of her energy breaking formula down.
Anyways that was my scary story and I am thankfull that everything turned out ok!

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