Friday, August 17, 2012

A whirlwind week

This is not a week I would love to experience again.  Let me explain.

This week, my house of cards fell apart in a flourish.  After innumerable calls back and forth between three perinatology offices, my local OB, and CHOP, we finally figured out that nobody but CHOP really wants to deal with my issues.  The perinatology group that has treated me up to now, monitoring sugars twice a week and doing all our genetic testing, feels we cannot continue there.  The big concern is that once non-stress tests begin, they would have to admit me to a hospital not equipped with a high enough level nicu should I show signs of labor or a problem.  I get it...I really do.  Do I wish we could have resolved this months ago and not waste hours of time?  Sure. 

The second choice perinatology group is my local hospital.  While they have an appropriate nicu (and would, gasp, be convenient!), they also were inappropriate since they refused to track my sugars/insulin dosing.  They would only perform the non-stress tests and wanted to get yet another doctor (endo) involved for the other piece.  Never mind.

Meanwhile, folks at CHOP weren't talking to each other and confusing the whole thing by transferring my care over from all of my current providers without my knowledge.  Turns out it was by mistake (I think they saw transfer at 37 weeks and mistakenly thought we were already at 37, but we're only at 27 weeks).  But, after debate, they decided they really did want me full time now. 

It was exhausting.  Monday alone had 8 separate phone calls related to this, all during the work day.  It's enough to have this CHD issue, but to also have full blown diabetes and a potentially dangerous cord's just overwhelming.  Every conversation with a healthcare practitioner is complex.  They're ready to shotgun an answer about what to do after the first part of the explaination...and then I have to slow them down and say, "yes, and there's also this and this and this going on."  As my local OB said...I hit the trifecta of complex pregnancies.  Joy!

Admittedly, I got depressed and angry for a day.  Pissed off and frustrated.  You pick the adjective.  But, I've calmed down and realized (after talking to my Dad) that this is a blessing in disguise and now all my care will be seamlessly coordinated at CHOP. 

Why did I fight this initially?  CHOP is about an hour drive from my office, or 1 1/2 hour drive from home.  Considering we're about to begin 2xweek testing, that becomes mighty burdensome on my work schedule.  And honestly, I don't have any other energy to offer work in exchange.  When I was pregnant with Olivia and had tons of testing for diabetes, I simply worked late on the days I was out of the office.  I just can't do that now.  First of's more time away.  I could easily miss 2-3 hours for each non-stress test day.  There's no way I can tack that onto the end of the night twice a week and not exhaust myself. hard place.

Regardless, it's decided.  All CHOP, all the time.  After this was set in stone, I spent two days out of town traveling for work meetings.  I usually really enjoy these trips -- they suit me.  But this time was more difficult physically because of the pregnancy and I found it was super difficult to manage my diabetes care.  (What I do on the road is meet with donors, which always involves some sort of dining.  It's never really possible to excuse myself right before we eat to go into the bathroom for an insulin shot!)  But, I'm back now, unpacked and happy to be home.  Probably one more trip before the baby arrives, but I'll worry about that in September.

So, needless to say, this has been a complex week.  I'm tired and feeling a tad dulled from the whole experience.  The weekend is almost here, but already full of tasks and obligations (inlaws and volunteering), so I'm not sure how much rest will really happen.  I keep thinking that I have to slow this all down, but it seems so very hard to do with a house to run, a baby to prepare for, and a family to see.  Maybe I need to practice saying "no" more often to folks.  Never been a strength.

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