Thursday, November 4, 2010

Hope Lives Here, Part I

Well as you all know, we were up in Philadelphia yesterday at Children's Hospital of Philadelphia (CHOP).  Our day started at 7 AM at the hospital so we drove up Tuesday night after work and stayed in Philly for the night.  On our way through the city to the hotel, we noticed that the light poles around City Hall had banners that read, "Hope Lives Here.  Children's Hospital of Philadelphia" and we even saw a billboard on the way into the city with the same slogan.  When I saw that billboard and the banners, I just knew that we were going to have a good day at CHOP.  I only wish I had gotten a picture of one of those banners.

The day was an extremely long one, so I think I'll break it down into two parts so I don't bore you to death!  Part I - the tests and Part II - the consult.

Part I

Like I mentioned before, the day started bright and early at 7 AM.  CHOP is located on Penn's campus and is surrounded by other medical facilities and hospitals.  It's definitely where you want to be if something goes wrong health-wise!  And at 7 AM when we pulled in, the place was already buzzing.  We were told to go to the Wood Center at CHOP, 5th floor to the Special Delivery Unit (SDU).  We soon found out, that SDU would be our homebase for the day.  Every single person we came in contact with at CHOP from the registration lady to the doctors, were so nice.  We checked in, filled out some lengthy paperwork (were even offered breakfast!), and then met briefly with our "quarterback" Stefanie, the genetic counselor.  Stefanie already had a whole binder specific to our case with our records and everything and was up-to-date on everything we had been told and been through.  She gave us our schedule for the day and explained what each appointment would be.  Our schedule was as follows:
  • 7:45 AM - Ultrasound
  • 9:45 AM - Genetic Counselor
  • 10:00 AM - ECHO (ultrasound of Stephen's heart)
  • 11:00 AM - Insurance/Billing Consult
  • 11:30 AM - MRI
  • 1:30 PM - OB/MFM Consult
  • 3:00 PM - Nephrology Consult
A few minutes later, we were whisked away to the ultrasound; all in the SDU.  The radiologist was really great and explained a lot to us and we were able to get a really good view of Stephen's kidneys.  He also explained to us that the kidneys should be about the same size as the baby's gestation age in centimeters.  So since I'm 29 weeks pregnant, his kidneys should be somewhere between 2 and 3 cm.  Stephen's kidney's are over 5 cm.  And he showed us some of the cysts that are visible on his kidneys.  The radiologist did a head to toe scan of every single organ, limb, finger and toe.  And it was a long process!  Because there's no amniotic fluid, it's really hard to see things and the baby isn't able to really move and extend his limbs, which makes it even harder to get a clear picture of everything.  In total, the ultrasound was a whopping 2 hours!

From there we went down the hall for the ECHO ultrasound.  What was so cool about the ECHO ultrasound was that the doctor's were watching the monitors from across the hall in another room, so the results were instant.  And if they needed to see anything else, that could be done too.  This one was pretty boring to watch because we had no idea what we were looking at and I actually snoozed a little while the radiologist did her thing on my belly.  The ECHO was about an hour.

Then we went back to meet with Stefanie to chat some more about our family health history and then it was off for my MRI.  By this time it was about noon.  I had had an MRI before, so I basically knew what to expect, but it was strange being in the MRI machine pregnant.  Between the vibrations of the machine and the loud pounding (and maybe the sugary fruit snacks I had...I got a little lecture from the MRI tech lady about how bad fruit snacks are for you, but a pregnant lady has got to eat!!), Stephen went absolutely nuts during the MRI!!!  It felt like he was going to jump right out of my skin.  Between him moving like crazy and having already been laying on my back for hours that morning, it was a tough 45 minutes in that machine aka "the coffin."  But we got through it unscathed.  The basic jist of the MRI was to get some good images of Stephen's chest cavity.  I think I was probably their biggest and easiest patient of the day though.  They don't usually see adults, since it's a pediatric hospital.  And the poor little kiddies have to be sedated most of the time because it's so scary for them.

Poor Billy, during all of this he had to just sit there and watch.  I can only imagine how tired and uncomfortable he must have been throughout all of those tests.  But he was a real trooper!!  At least I was able to lie down and actually close my eyes a bit even though I was being rolled back and forth and back and forth during all the ultrasounds.

After the MRI (it was now 1pm), we took a 30 minute break for lunch in the cafeteria and then it was back to the SDU for our consults.  More on that later!! I like to keep you in suspense! :)

1 comment:

  1. Tish and Steve love you all so much. Our thoughts and prayers follow you everywhere and all the time. Lindsey, Bill and little Stephen, wherever you go we are with you. Your blog is amazing, but then the writer is one truly amazing woman and mother-to-be! XOXOXOX Tish