26 June 2011


Sick kids make me very cranky.  As it stands on a perfect day I hardly feel like I'm keeping it together, but as soon as anyone in this house gets sick I just want to go postal on everybody.  First off I am never the one who gets sick, so I am the defacto nursemaid. Right now Sam, Roan, and Lula are all sick and are all a spluttering, wheezing mess.  Lula sounds like a 14 year old french bulldog and Roan sounds like Bea Arthur.  Sam sounds like himself, only whinier.

Most days Lula's medical regimen is a hypochondriacs dream, but now that she's sick it's almost comical. In addition to her dismotility (3x/day) and reflux meds (2x/day), and her "spa treatment" (Atrovent nebulizer 2x/day) she is also on an antibiotic (2x/day), a steroid (1x/day), 2 topical creams, an oral cream, and an Albuterol treatment.  I literally cannot figure out how to time all of these so that there is at least half an hour between drugs.

We have her hooked up to a machine called a pulsox which reads her heart rate and oxygen saturation and when her O2 gets too low we have to hook her up to oxygen (I have this bizarre association between oxygen tanks and old, chain-smoking ladies in Bingo halls, which is a little disconcerting). This whole medical circus has taken over our every waking moment and none of it even addresses the longer term problems that are going on with Lula. Most of this is to treat a cold. Once I have her stable and sleeping, once she is over this cold I will still have an unknowably sick child. It leads to an endless cycle of fear and anger, fear and anger, and who can I direct all of this fear and anger at?  There is no outlet because it's no one's fault.

It's absurd, I know, but this is when I start to ask the universe "what did I do to deserve this?"  I used to work with a photographer named Brenda Ann Kenneally, who documented crack addicts, including a woman who was actually smoking crack in the hospital while in labor and her kids were born healthy.  I think this is part of why all of the doctors and the medical community are so frustrating to me. They address the "what" but generally avoid the "why". Their protocol is fix now, ask questions later (or never).  They can't ascribe meaning to any of the immense life changing decisions they are involved in for other people.  Suddenly you find yourself in your living room with half a dozen medical devices, a laundry list of medicines, and they haven't managed to address what any of this means to your life or the life of your child.

This entire thought process cycles through my mind endlessly and it's frankly exhausting.  I think we are hoping that at some point me might find a modicum of peace and acceptance within our lives.  I think we are just tired of being frightened all the time and weeks like this don't help with that. Thus the crankiness.

I just realized this post is a hopeless downer.  I have been trying to re-edit it since yesterday to have some sort of upswing but I really can't, so here it stands.  Hopefully when everyone stops sneezing on me I'll be in a better mood.

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