Averie Elizabeth

Averie Elizabeth

Who is Averie?

Averie passed away Sunday November 13th at 3:33am due to complications of her mitochondrial disorder. My beautiful princess is finally healed and in heaven with her brother :)

Averie is a crazy, beautiful, smart energetic 7 year old who keeps everyone on their toes! Averie has been fighting Alpers since her first seizure in 2004 at the age of 4. Her older brother passed away from Alpers when she was just 1. Just recently she became a big sister for the first time! Averie is strong willed and stubborn...I believe that's what keeps her going on the days her disorder creates obstacles for her. She is my special little girl who I love one cow, two moons and three fences big!

Thursday, August 25, 2011

Oh the nerve!

So. Let's start off by saying Averie did awesome today off of the bipap! She maybe did too awesome tho...we had made the decision around 5pm to put her back on it so she could take a break- its super hard work breathing all day after its been done the last week and a half for you.  Anyways...someone made the call to not put it back on because everything looked fine. At around 8:30 she got tired...so tired breathing was not on her to do list :( Averie destated and was in pretty dire straights...there was talk of reintubating, as they didn't know if bipap would be enough. An attending( still confused by attendings vs fellows and residents???) pulls me aside and starts acting like this is the end all and I need to let her know if I want her to allow them to intubate...because we might not be able to take it back out due to her "condition "........mind you I had just played the blinking game with Averie minutes before all this. I just couldn't believe that this stupid doctor was wanting me to make end of life decisions! I called her out on it big time...I explained that Averie is very much still THERE!! She doesn't need a bunch of F*#@IMG pessimists hanging around her ....what she needs is time...baby steps to recovery.  In my mind that is possible until the day its not...make sense? Does to me! I'm not giving up on her. I don't know what to "expect"- gosh they love to ask that .."what do you expect the outcome of this to be?" What the heck do they think I expect!? I expect everything to be ok! If its not I'll adapt to Averies new baseline and keep moving forward. I reminded them I've had to make THE decision before...I don't feel like I'm anywhere near that point with Averie...so they better all stop acting like it!! All I want for her is time...every minute she gets is another minute that EPI-743 has a chance to work. Most of you who know Averie, know how stubborn she can be...she won't give up without a fight and neither will I! I love my baby so much and I just need Averie's team to rally! Say some prayers! Pray that she gets stronger and pray we can find the right phenobarb level. There is still hope and I will not stop believing!

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