ChezPerky

So last Thursday, my OB’s office called me because for the three hundredth time my home health care company (Alere/Matria) had alerted their office to the fact that I wasn’t getting better… just worse.  The nurse (who hadn’t consulted with the OB) called me in a panic, couldn’t believe she hadn’t been told earlier (she had been – plus they get weekly reports from the home health company), and she demanded that I come in immediately to see the OB because they couldn’t do anything (change orders, etc.) until they saw me and ran some tests.  She had a 3pm appointment available, which gave me exactly enough time to send an email canceling my 3pm meeting, and get on my way to the OB’s office.

Of course, I was coming from work, so I looked pretty decent.  After all, at that point, only one person in the office knew I was pregnant (my manager), I do my best not to look like my miserable self when I’m at work.  My hair wasn’t a mess, I was wearing makeup… you know, I looked human(ish).  My OB walks in the room and says, “Well, I’m not worried about you at all! You look GREAT!”  That’s all fine and good, but don’t you want to know what’s going on?  I feel like … well, like “not great”.  I’m happy that you’re not worried about me, but hey, could I get a little help over here?  I was spilling ketones, losing weight, and hadn’t kept a single thing down (even my trusted SuperPretzels were failing me) in over a week.    Medically/Nutritionally compromised?  Maybe not.  But certainly my quality of life has taken a significant hit recently – and my ability to function at the bare minimum level I need to is waning.  As far as I’m concerned, that’s just as critical as whether my CBC is normal.

He wouldn’t discuss a steroid protocol with me (“We’ve never really done that here…”), he made a face at adding pyroxidine and Phenergan to my IV meds (but begrudgingly agreed to call in the Phenergan), and repeated over and over that “he’s not worried!”  He did check the heartbeat with a doppler to make sure baby’s still hangin’ out (heartbeat was present and accounted for), and he wasn’t going to draw labs until I insisted.  Meanwhile, I was standing right there when he asked his nurse to call in the IV Phenergan for me to the home health company.

The nurse never called with the order.  On Friday, my nurse at Alere called my OB’s office and played phone tag with them all day, while the OB nurse tried to verify with my OB whether she could authorize the change in medication orders, because he had written nothing in my chart about it.   Nothing.  The OB nurse failed to communicate the order to Alere before COB on Friday; as a result, I spent Saturday completely useless and miserable, praying for death.  Meanwhile, my OB’s office had also been alerted to the fact that my PICC line probably needs to be changed, but they said and did nothing about it.  (My OB *did* look at it from across the room and said, “It looks great!”… I’m sensing a theme here, how about you?).  My Alere nurse changed the PICC dressing on Friday and on Monday, and said the line really needs to be removed and replaced in a different location.  Alere reminded my OB’s office that they needed to look at it.  The phenergan finally got called in on Monday.

I talked with my OB’s nurse Monday and nearly lost it.  I was completely ticked that it took five days to call in a very simple order.  And her response?   “Well, you have to understand, I have emergency calls to take during the day.  I can’t waste my time sitting on hold.”  Never mind that every time the Alere nurse calls her, she sits on hold at least as long.  Never mind that I’ve given her explicit instructions on how to get through quickly to an Alere nurse.  “I have much more urgent matters to take care of.  I have to prioritize.”  Wait, what? I’m not important enough to bother with?  Hi!  I’m a paying customer.  I have a complex medical issue (or three) that I need assistance with.  I’m glad I’m not an emergency yet.  I’m trying to stay that way.  But if this PICC line doesn’t get changed, I will have an emergency that needs to be taken care of, and I’ve lost all confidence that the office could actually respond appropriately and within a timely manner to assist me in the case of a true emergency.

And today I had my regularly-scheduled appointment with one of the OB’s in the practice (a different one) and told him exactly how frustrated I was that an order that should have been called in on Thursday didn’t get taken care of until Monday.  And I explained that there’s a problem with the PICC, but he brushed me off at first and wouldn’t even look at it.  I pushed further and told him the specific issue – and though he still didn’t bother to look at it himself, he agreed that it needed to be moved.  He also agreed to change the dose on my IV Phenergan order.  Anyway, his nurse was supposed to take care of placing the new order with Alere for the Phenergan, and to coordinate with the hospital PICC Team to get me a new line ASAP.

Suffice it to say, neither was accomplished today.

The nurse called me an hour later and said, “The PICC Team said that since it’s infected, you have to go to the ER, get blood cultures drawn and if they’re negative in 72 hours, they can replace your PICC line.”  Um, but it’s not infected.  “Dr. R. said it was.”  Um, Dr. R. didn’t even look at it.  I tried explaining the issue to her, but she simply said, “Since Dr. R. said it was infected, you have to go to the ER.  If the ER doctor says it’s not infected, they can call me and I’ll call the PICC team.  I spent several useless hours in the ER only to be told, “but we don’t DO PICC lines!  [I knew that].  It’s clearly not infected, but obviously needs to come out.”  That was the extent of my ER visit, for which I had the privilege of paying a $35 copay, plus probably the balance since I haven’t met my deductible yet.  Good times.

Now it seems that maybe I’ll have a new PICC line tomorrow?  Oh, and that updated Phenergan order?  Didn’t happen today, despite the nurse’s assurances that it would be faxed today.  Yeah.