Saturday, February 19, 2011

Things I Didn't Know About Medicine

Since I am not a part of the medical community, but I have a lot of experience dealing with them, I thought I'd share some of my insights today with a post about things I've learned about the medical community.

One thing that I didn't know before the Dancing Queen was born is that medicine is more of an art than a science.  Generally, if you get sick, you see a doctor, they give you a medicine and you get better after a couple of days or weeks.  Or, you have surgery, get it fixed, heal from that and you go on with your life.  At least that is what I thought before the Dancing Queen was born.  Everything with her is the edge of knowledge.  There are no answers, but lots of questions.  Right now, they are treating the Dancing Queen with an antibiotic she has never used before in hopes that we can get rid of the infection she has brewing on top of the virus that has got her locked in intensive care all week.  The doctors don't know if it will work and if it doesn't, they'll remove the tubes from ears and hope that works.  All guesses with no real answers.

The docs don't know why the Dancing Queen won't eat (even when healthy).  They don't know how to fix her main heart/lung defects now.  The doctors' solution is hope she grows, which they have been telling me  since I was 20 weeks pregnant with the Dancing Queen.  She hasn't grown much in that time, so I don't know how they expect her to grow.  Medicine is a guessing game, yet doctors act like the hold the answer to everything in their hands.

The last thing that I will share today about what I didn't know about medicine is that the medical community doesn't multi-task well.  By that, I mean medical staff look for one cause to a problem.  When they find that cause, they don't consider anything else.  I find this very odd because it has always been my experience that multiple things occur at once. I can have a splinter in my thumb and a broken leg.  Both could make me miserable.  Yet, once the doctors isolated the Dancing Queen's virus that was attacking her respiratory system, they wouldn't consider that anything else was attacking her ears, until days of my pushing.  We've had this problem before, especially after surgery.  Open heart surgery affects all of the systems of the body, not just the heart and lungs.  Yet, after all of the Dancing Queen's surgeries, when she has had GI problems, the docs won't listen to me when I ask them to get a GI consult.

This is something else I didn't know about the medical community.  They all specialize these days, but nobody talks to each other.  We are lucky that the Dancing Queen's primary specialists are all in the same office so they can talk with each other, but overall, that doesn't happen.  As an attorney, when I have an accounting issue in a case, I consult an accountant.  If the case involves power plants, I talk to power plant engineers.  If I have a medical issue, I talk to a doctor in that field.  Yet, in the medical world, the different specialties only talk to each other when pushed. 

Now none of you will have to spend time in the hospital to learn these lessons.  As an aside, I haven't posted in a couple of days due to the continued hospitalization of the Dancing Queen and my own illness.  It is hard to do the whole hospital/work/home thing healthy, but even harder sick.  I crashed for 10 straight hours last night and thought I would feel a little better this morning, but not much.  Luckily, my husband is freaking amazing because, after he spends some quality time with TRex, he is coming back to the hospital so I can sleep at home again.  It looks like the Dancing Queen will be released from the hospital tomorrow, so that helps.  It will allow the Mad Scientist naptime tomorrow.

One of the things I never knew before the Dancing Queen was born is that sitting at a hospital bedside is extraordinarily exhausting.  You wouldn't think it because you mostly just sit, but the worry alone is tiring.  To that, you add the frustration from trying to get a sick child to eat or drink and try keeping a toddler calm when medical staff comes in or worse, keeping them calm during procedures.  It takes everything in your being to keep a straight face and be reassuring as your child is poked and prodded for the upteenth time.  It is all tiring.  But, since we can't leave the room even to pee because the Dancing Queen will freak out, there is no such thing as regular drinks and meals.  When we do escape for food, it is fast food/hospital food.  Not good, nor fulfilling and generally leaves you more tired than if you hadn't eaten.  Powdered coffee in a styrofoam cup doesn't lead to the alertness that real coffee does either.  The Mad Scientist and I generally do 24 hour shifts, switching places in the evening so that the person who has likely been awake for 24 hours can go home and sleep, then work the next day and come back for their 24 hour shift after that.  It isn't great, but allows both of us to go to the hospital and see both kids each day.  More things I didn't know.

1 comment:

  1. Haven't you heard the term "practicing medicine"? I just read an article about "Watson" the super computer that just won big on Jeopardy. The hope is that such computers will put together the findings of many clinicians and, in my own terminology, spit out the diagnosis and treatment regimen. We'll see! In the meantime, I was admiring the Dancing Queen's lovely long eyelashes and then saw the photo of one tired and concerned mommy. I hope all of you can get home and relax and heal. TRex so reminds me of when my boys were four year old dinosaur experts! I know he and D.Q. miss each other.



Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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