Wednesday, January 27, 2010

And some people say we don't need healthcare reform...

I spent a good portion of my day on the phone with doctor's offices.  What great fun.  We are the process of getting Tru scheduled for a muscle biopsy and to repair is umbilical hernia.  (Although I might miss the hernia a is a great way to tell if he is full.  We call it his "turkey popper" because his done!)  We want to do it all at once so he only has to be under anesthesia one time.  We also had a retest of his urine yesterday to see if he had gotten over his "bladder infection." 

Why the quotes?  After a painful cath situation where my son did not, to the awe of everyone involved, produce any urine Truman was sent for additional blood work with a baggie attached to his wally wally.  Great fun for him I am sure.  They stuck him with the needle, he peed a bag full.  He had been running a 104 degree fever for no real reason so they were looking for a bladder infection.  A few hours later I got the call that he did indeed have a bladder infection.  So we started an antibiotic.

BUT suddenly, two days I received another phone call saying he didn't have an infection after all because his culture was normal and in fact the original UA dip was normal as well.  The nurse told me to keep giving him the medicine if "he was getting better because it seems to be working on something."  She did inform me that he had protein and ketones in his urine but that didn't seem to bother anyone but me.  We are currently testing for metabolic disorders that have major kidney involvement...protein and ketones are not a good thing.  So the next day I called back, got another nurse and tried to see if we could retest him.  She told me that I had already been told the test was normal, the doctor hadn't given instructions to retest, so I should listen to the doctor and basically shut up and mind my own business.  Happy mommy, right?

A few minutes later I was at the office handing in my records release form and calling to schedule an appointment with a new doctor.  Low and behold the following day I received a phone call from the doctor himself saying that we should retest in a few days to make sure something wasn't going on with his kidneys.  Hmm, interest thought there Doc.

So we retested yesterday and were told that we would have the results first thing this morning.  I started calling around 11:00 and finally around 2:30 my cell rang...I raced to my purse trying to find my phone (see my last post to understand the problem there) and missed the call by seconds.  I quickly called back and was told that I would have to leave another message because they had moved on...then I heard the beep in my ear that she had left a voicemail...I told her to get the nurse on the phone or the doctor I didn't care but I wasn't going to get off the phone until I spoke with someone.  She very pleasantly (note the sarcasm) told me to hold.  The nurse picked up a few seconds later and told me that his test results came back normal.  HURRAY!  Now I don't have to deal with that office any longer...we are still changing doctors.

Then I got on the phone to schedule the stuff at Children's Mercy.  Let me preface this part by saying we LOVE, LOVE, LOVE Children's Mercy.  It is an incredible place filled with people who love children.  From the guy mopping the floors to the head neurosurgeon everyone there has one goal--to take amazing care of children.  I feel so safe when I am there.  But, scheduling is a pain in the butt.  As you can imagine at a top notch Children's hospital it is difficult to get things scheduled in a way that makes sense.  We will go there 3 times in one week because we can't get all of our appointments scheduled on the same day...with the same department...

Anywho, the nurse I was talking to was amazing.  As was to be expected.  She explained the procedure, she told me about the doctor, she asked me questions, she answered mine in depth.  Awesome.  Then she got to the "pre-auth" portion.  Apparently we have to have pre-auth appointments with the orthopedic doctor who is doing the muscle biopsy, the anesthesia doctor AND the general surgeon who will perform T's hernia surgery...all separately.  3 appointments.  One doctor does them only on Mondays, one on Tuesdays and the other is available anytime...if you can get the appointment.  So the awesome nurse told me to deal with general surgery first because they are typically more difficult.  I called and was actually able to get in next Tuesday.  I will start the process tomorrow with the other two doctors because I was too damn tired by that point to do anything but celebrate the fact that I had at least accomplished one appointment.

Still waiting to hear from the genetics clinic...but we did get the bill.  WOW.  I won't go into the gory details, but one test, yes ONE TEST, was over $5000.  My insurance company must love my family.

So to recap--Truman has clean urine.  He has an appointment with general surgery.  He will have an appointment with ortho and anesthesia.  We are getting a new primary care doctor.  It all is costing a butt load of money.

Big day.  But look at that face...

Worth it all...


  1. Your little guy has been on my mind a lot. I hope all goes well Becca!

  2. I don't know if it's any help, but we had a lot of the same issues with Children's when we were were trying to figure out Annie's cough (she's had a chronic, nighttime, nobody's-sleeping cough since she was 6 mos old.) When I finally gave up on the Lawrence docs and tried to get an appt at Children's, I was told it would be five months!

    I was able to get in faster, though, when my pediatrician called to make the appointment for me. Doctors help doctors out, I guess. It turned my four month wait into a one month wait, which was still an eternity but was preferrable since I was due to deliver David the same week as the latter appointment.

    Maybe your new doc would make the call for you? Also, they were instrumental in getting as many of my appts scheduled on one day as possible.

  3. That face says it all - "I have a mom that loves me more than anything no matter what my medical issues are!!"

    Usually like Dawn said *waves* (hey girl!) doctors help doctors. I was amazed last week when the nurse said she could not make any confirmation on J's MRI that my husband called and we had an answer in 2 minutes. Hmmm... MUST be an advocate for your child - especially in this healthcare chaos.

    We should definitely chat. I've done massive amounts of research on Fatty Acid Oxidation Disorders (metabolic issues). Obviously it hasn't helped here since we STILL don't know what is wrong with Aly 2.5 years laer and now Jeffrey, but wih 30,000 enzymes and only 85 defined, maybe us moms can rally and get our kids figured out!!

    So they never did figure out what the multi-day high fever was from? Thank goodness you are so proactive!!
    We will keep you in our thoughts and prayers!!

  4. *eyes crossing* WOW. Holy crap, Becca. I don't know how you do this, keep everything straight. But I'm not surprised that you handle this so well just because you are you.

  5. We still don't know why Truman had the fever. I'm going to assume it was a virus...but at the same time we can't assume that it doesn't have something to do with metabolic issues.

    I would love to get together and chat Stephanie! I think you could have some valuable info. I had to bow out of tonight's get-together because of the stomach bug...but I would love to try for the next one!!