Is there a doctor in the room?

If you've read here before, you know that Katie has been fighting a strep infection that went untreated, and traveled to her knees.  You can read more about it here if you have no idea what I'm talking about.

So we were told in March when her first diagnosis was made that she should have a heart ECHO after 4 months of penicillin.  This pediatrician said that she had talked with the Pediatric Infectious Disease people at Children's Hospital and they said that it takes longer for the heart valves to be affected, if they are going to be....so that's why they wanted to wait 4 months, instead of doing it sooner and missing something later.  They also said that we had to call their nurses to set it up through Children's so that both facilities would be involved.
Ok - so 4 months brings us to July.  I'll admit - the 4th was busy, we were in IA for a long weekend, and I hadn't gotten around to calling to scheduling the ECHO yet.  But let's go back for a minute.....

Katie was in for a checkup on June 17th with this pediatrician that we'd been seeing.  We wanted to get a check of her knees and do another urinalysis to check kidney function.  Since it took a long time the first go-around, I brought our urine specimen with me - (tip - Medela breast pump bottles work REALLY well for this....however, I did NOT get it given back to me!)
The pediatrician said they would call if there were any abnormal results.  Let me repeat that.  The pediatrician said they would CALL if there were ANY abnormal results. 

2 weeks go by, and we hadn't heard anything.  John mentioned maybe we should call to make sure, I said yeah, maybe....but we didn't.  So - we dropped the ball too, but honestly, we weren't expecting to have to.  Anyway - SIX weeks later, on June 28th - I get a letter showing Katie's test results with TWO items showing abnormal amounts.  The pediatrician had HANDWRITTEN a note saying "We may check this again in the future."  WTF?  I don't rate a phone call??  A phone call telling me what these results mean??  So I call in to speak with the dr, and I am told that a message is sent into one of her nurses and they will call me back.  This was on Wednesday, June 29th.  I believe it was 2 days later when I heard from someone, and they were asking me what I wanted to do - did I want to do another urinalysis? If so - how long did I want to wait? Did I want more tests?  etc.  What the hell do I know?  I'm NOT the dr!  Shouldn't someone ELSE - say, someone who went to medical school be advising me on what to do?  So I said I would talk it over with my husband and we'd call back.  She said to call anytime and they'd squeeze us in.

I talked with John and we decided to re-test, of course.  Then it was 4th of July....and then we were in Waukon til July 9th, etc.  So I called July 13th to see if we could come in.  I also wanted to schedule Katie's heart ECHO, and to see about getting a referral for a 2nd opinion.  The receptionist said she would have a nurse call me back about the urinalysis, and another nurse call me back to schedule to heart ECHO.  A nurse called on the 14th and asked why we feel we need to have a urinalysis done.  I felt she honestly was treating me like an idiot.  "Well, are there symptoms that would warrant such a test?" Ummm....gee, the fact that her pediatrician wants the test done?  YES!  So I spend another 15 minutes explaining our history since March that she hasn't taken the time to read.  She said that she had to get a lab form signed by our pediatrician first - who happened to be out of town until July 19th.  When I asked about the heart ECHO, this nurse said she had no idea what I was talking about.

They call on the afternoon of the 19th (Tuesday) and say everything is set to go.  I can drop off the urine at the lab anytime, someone is there til about 7-8pm.  I asked if I could drop if off the next day - sure.  So after Will's t-ball, I swing over to the clinic with a specimen in a not-as-fancy container.  I am greeted at the lab door by a tech who has NO lab paperwork and nothing to show what tests are to be done.  Great.  She asks that I write the name and DOB on the container and she'll try to figure it out Thursday.  She'd give me a call back if there was a problem. 

I hadn't heard anything, so I call the clinic the following week on July 27th - because by this time I don't trust them to get back to me at all.  I ask about the urinalysis results as well as Katie's ECHO appointment that I had requested 14 days earlier.  She makes a note requesting a nurse to call me back about the ECHO and sends me over to labs for results.  They show -AGAIN- elevated abnormal results, which no dr has seen fit to call me back on.  I thank the tech and hang up.  The next day I get a letter from the lab, showing the results with a typed message from the ped (no signature) saying that we don't need to take another specimen, bring her back if symptoms re-develop.  (Wellll.....the symptoms haven't gone away....soooo, thanks for checking in.)  SIX days later, I get a phone message from the pediatrician informing me of the results from the urinalysis.  When I asked her about the letter today....she had no knowledge of it being sent out.  So WHO typed that message then????  The janitor????  Might as well have been.

That pretty much brings us to this week.  I have called 2 times to try to get Katie's ECHO scheduled and to get a referral for a 2nd opinion - that would make 4 phone calls total since July 13th.  When I called on August 2nd - I was told a nurse would get back to me and that they would do a 3-way type call with Children's to schedule the appointment.  Today - still nothing, so I call again.  This time I talk to a nurse (Amy) who was actually helpful.  She said she saw no reason why I couldn't call Children's myself to schedule the ECHO.  I about hit the floor - I told her about how I had been told for the past 4 months that it had to go through their clinic.  She said if that was the case, Children's could call them after I make the appointment....FINALLY, she gave me a direct phone number (which I have called....left my info and have been told they'll call back....we'll see.)

Next, I tell Amy how frustrated I am because I feel like no one is suggesting anything to do next.  Katie will be done with their recommended 6 months of penicillin on September 8th....then what???  Does ANYONE have a plan for what the hell to do then?  Are we doing more tests to check to see if the infection is gone?  Cuz her knee is still swollen.....do we just wait for the infection to rise up again, this time resilient to penicillin??  No one is telling me ANYTHING or calling me back.  I want the name of another dr.  She said to hold on - let her grab the pediatrician.  She gets on the line and starts with "Ok, I feel like we should...."  I interrupt and tell her that I have NO interest it what she feels we should do next, I want to go see someone else, and I want the names of the doctors she has been in contact with at Children's.  I feel like she has no idea what to do next, and has not made any kind of effort to come up with a solution to Katie's symptoms. 

"Now calm down, there's no need to get upset."  she said.  Well, that did it - and I started yelling (very loudly) about how I'm damn well going to get upset because I am getting the feeling that she doesn't give a damn about us or our children.  She then goes on to say that she didn't feel the need to get in touch with me because she hadn't heard from me.  WHAT THE HELL?  I spout off dates and tests and phone calls and messages to her (all of which I've stated above).  She says they are updating all their computer systems so info and messages are getting lost.  I shout about how that is no excuse for compromising patients' health and maybe Park Nicollet shouldn't update anything because they are losing contact with the very people they are responsible for caring for.  She starts giving me names of fellow Park Nicollet doctors and I make it VERY clear I want to have nothing to do with Park Nicollet - I want out.  So she finally gives me the name of the Pediatric Infectious Disease Specialist she'd been talking to at Children's. 

I was shaking and felt empowered, but now I'm scared to contact this specialist cuz maybe the pediatrician will call her and I'll have a "mark" in my folder saying I'm such a bitch.  You remember that episode of Seinfeld where Elaine couldn't get into see a doctor because of her file........