Sunday, November 6, 2011

Managing Millions of Meds

A snapshot of the various meds that Joshua uses on a (mostly) daily basis

My son is a medically complex guy. Part of his brain disorder means that his pituitary gland doesn't work well. We give him pills and a shot every day so that he will have the hormones that his body needs but does not naturally produce. It turns out that having your hormones off-kilter means that there are a lot of random other things that can go wrong with your body. I'm not sure if Josh's plethora of other medical problems come from his hypopanpituitarism or just because he's a complex kid. All I know is that I made a list of his medical doctors the other day and this is the list that I came up with:

Pediatrician
Opthalmologist
Endocrinologist
Neurologist
Gastroenterologist
Ear, Nose and Throat specialist
Sleep Disorders specialist
Dermatologist
Urologist
Allergist
Psychiatrist

Additionally, most of these specialists are seen at our local Children's Hospital, which is a world class hospital but also a teaching hospital. This means that each specialty clinic has a team of attending physicians and a group of residents and fellows that often see, follow, and manage meds for Josh. This means that many of these specialties has at least 3-5 different physicians that I interact with.

It's definitely been a brain stretching experience for me to learn to manage all of Joshua's medical needs. In fact, when I think about the reality that this is what I do (almost always) accurately and successfully every day, I am impressed. In college it took all the skills I had to keep track of my own purse and backpack. I've never been a detail oriented person. It was a joke among my friends about how messy my room was and how I was always forgetting things. I guess you do what you have to do and stretch how you need to stretch to love the people that God has put in your life.

2 comments:

  1. We don't have the millions of meds (we're down to just Tylenol for teething) but we do have the specialists.

    Pediatrician
    Neurologist
    Geneticist (possibly a one-time visit)
    Opthalmologist
    Endocrinologist (one-time visit)
    Hematologist (just got released from his clinic)
    Nutritionist
    Speech Therapist
    Occupational Therapist
    Physical Therapist
    Child Development Specialist

    I was talking to mom about this the last time I was in San Jose for a visit and she basically agreed: you just do it.

    Daniel is nowhere near as complex as Josh (we're dealing with developmental delays, not autism) but I do feel for you -- it's A LOT.

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  2. I am impressed. You are a good Momma.

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