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April 15, 2012

Photo Apr 13, 10 13 15 AM

It was a short yet productive stay at the hotel DuPont.  We managed to check quite a few things off of our medical “to do list”.  We were discharged early on Friday afternoon after deciding to hold off on giving Lucy blood.  Her counts are low for Lucy, and in the past we would have transfused her at this point because her heart rates would be indicating that it needed more fluid, but she is currently not acting symptomatic of needing blood, so we wait.  The increase in clonidine and the addition of phenobarbital appear to be doing something for Lucy’s autonomic system, we are not seeing the erratic heart rates that we are used to seeing in our girl.  Instead of swinging heart rates we are seeing swinging body temperatures…ugh.  We have learned that if it’s not one thing, then it’s at  the very least something else.

We left with an increase in her anti seizure meds and a new med in our pharmaceutical arsenal, IV valium.  We are cautiously optimistic that valium is going to be beneficial for Lucy.  She did not have a paradoxical reaction to the med which is amazing in and of itself, and it appears to calm her and make her sleepy, all things we were hoping this med would do for our girl.  IV valium is on the nationwide drug shortage list, as is about 75% of the meds that Lucy is currently taking, so supply is an issue but we are able to get a limited amount.  For most of you reading this, learning that there is a nationwide drug shortage list is probably news to you.  For those of you who are or who have a medically complex kiddo like Lucy then you are most likely affected by this list too.  I could go on a rant about how we live in one of the wealthiest countries in the world, how we have access to the best medical facilities, how where we live we are surrounded by pharmaceutical companies, but yet we are unable to get certain life sustaining medicines.  If you read the list many of the companies site manufacturing delay as a reason for the shortage. When the drug finally becomes available or there is an alternate drug that can meet the patients needs, the supply is limited or becomes limited and demand increases, as does the price…hum.   Like I said, I could go on a rant about this issue, but I think I’ll just leave it alone for now.

Lucy’s central line issues appear to be resolved or rather dissolved(ha ha) for now.  We have been able to infuse and draw back blood on both lumens better than we have in a while.  Lucy’s central line is her life line, without it she would not be here.  Preserving the integrity of her line is essential and we try to be as proactive as we possibly can with it, even so things like this happen.  We are so grateful that we have top notch medical care so close to home. 

Thank you for all of your thoughts and prayers, love and support.

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