Intolerance…

We learned the HARD way that Ativan is NOT the drug for Lucy.  It is a sedative, and for most people it makes them calm and sleepy, but not for our little one.  Lucy’s brain chemistry is different, her brain does not react normally to sedative type medications.  For Lucy Ativan had the opposite effect, it made her manic.  We witnessed a similar situation when Lucy was given Versed for her G tube procedures last year at CHOP, she went manic on us then and the radiologist at CHOP had to call me back to try and calm her during her procedure.  I learned today that other mito kids have similar type reactions to Ativan.  I spoke to the doctor on call about it today and he explained it to me this way; kids with ADHD are treated with a stimulate type medication which is the opposite of what you think a hyperactive child should take, this is because their brain chemistry is different.  We will look into other medications that will hopefully be more effective for Lucy.

Without going into too much detail, yesterday was perhaps one of the most difficult days of Lucy’s life and mine as well.  In addition to all of the hysteria that we now know was exasperated by the Ativan.  Lucy started gagging, retching, and vomiting after attempting to start her on J- tube feeds.  Along with her J feeds not going well, her stomach has completely shut down.  She has a gastric drainage bag attached to her G port and it is pouring out green bile.  We can not put anything into her stomach without it coming back out.  We are relying on her IV of D10 to keep her going for now.  However, yesterday her initial IV infiltrated and we had to place another line ASAP as her glucose was falling.  Placing the IV was traumatic, it took over three hours to find a point of access.  The kids came to visit, but it was clearly not a good day for Lucy and we did not want them to see her like that.  I saw them for all of a few minutes when Drew took them to the gift shop, cafeteria, and then to our friend Raquel’s house for the night.  I needed Drew last night more than ever, as I had physically and emotionally reached my limit.

Lucy is no longer manic, thank God, she is the opposite very lethargic.  She is not looking her best, but you can see that she still has that desire to preserver in her eyes.   She is not tolerating feeds and has a temperature that comes and goes.  We are needing to suction her when she vomits.  We are not sure what is going on with her.  

Prayers are very much needed that things start turning around for her soon, so that we can have back the Lucy we know and love so much!