Charlotte's Journey Home

Just a Regular Kid, Sort Of

The 365th Day: A Cardiology Update

3 Comments

 

For 365 days a year, Charlotte is a regular kid. Her doctors’ appointments are the same as your kids’ appointments–check up, dentist, eye doctor, occasional sick visit for the dreaded strep test or ear infection.

Then there is the three-hundred and sixty-fifth day, the day we go to the cardiologist.  For the past several years,  Charlotte’s cardiology appointment in Chicago has been rather like a social call. She gets the EKG (screaming all the while because of the stickers needed to attach the leads to her chest and arms), watches a movie during the echo, and the doctor tells us it is all good. In Boston, there was no television and the doctor didn’t read the echo while we waited. Otherwise it was the same.

Charlotte takes charge of her blood pressure measurement.

On Thursday, we visited Dr. Young, Charlotte’s cardiologist since I was five months pregnant. Charlotte was excited because she got to visit the new Ann and Robert H. Lurie Children’s Hospital for the first time and we had arranged a VIP  tour for her after the appointment. I was looking forward to visiting with Dr. Young.

Everything went as it usually does, though I have to say that the iPad did mitigate the EKG screams. Then Dr. Young came in, gave us both hugs, and sat down to tell me what she saw in the echo.  There’s no way to be gentle about this or ease you into it, so I’m just going to rip off the bandaid, as it were:

The echo showed decreased velocity in the right pulmonary artery. This could mean stenosis in the conduit or in the pulmonary branch. When Philippe and I later read the echo report, we also noticed that several indicators could not be imaged that day.  Dr. Young is concerned that the conduit is coming to the end of its life or that Charlotte has narrowing of the pulmonary artery. That same morning, Charlotte complained of pressure on her chest.

We’re holding our breath right now for further tests.  The end of the conduit’s life means another surgery. We had been hopeful that the next repair wouldn’t come until adolescence so that Charlotte could have an adult-sized conduit inserted. Given that up until now she’s had few complications and best-case results, we have been skipping along with, it appears, rose-colored glasses.

Charlotte will get a holter monitor next week. This is a tiny EKG machine that she has to wear for 24 hours. It will record her heart rhythms during the active and inactive parts of the day, noting any incidents.  Due to the complaint of pressure, Dr. Young also wanted to have Charlotte wear an event monitor, a similar device worn for six weeks with a button Charlotte is supposed to push if she has any symptoms.  Since Thursday’s complaint was only the first one, I asked if we could hold off on that for now. Charlotte is very self-conscious about the monitor this time around and doesn’t want to wear it to school, so I really didn’t want to have her saddled with it for the first six weeks of her return to Chicago.

Next week, Dr. Young is going to Charlotte’s echo to Dr. Gossett, an interventionist.  Her belief is that is time for a cardiac catheterization to better visualize the conduit and arteries.  If necessary, such a procedure could also be used to balloon the conduit and possibly even stent it.  Depending on what he sees, we may need a deeper intervention.  We’ll know more about when, what, and whether we’ll be doing  soon.

————–

A few happy and interesting statistics:  Charlotte has grown 1.25 inches since her check up in June, measuring in at a stellar 52.5 inches (4′ 4.5″) and she weighs nearly 58 pounds.

 

 

Advertisements

Author: Culture Bean

I am a mother, a pre-published children's author, and a published academic. I am also a "mommy blogger," though I hate the term. My passions are reading and writing. As a professor, I strive to help my students think critically about the media and culture with which they engage. I've started this blog because it's time I put my money where my mouth is!

3 thoughts on “The 365th Day: A Cardiology Update

  1. Oh, poor kid having to deal with all of this stuff.

    I’ve done the holter monitor — twice. The electrodes are annoying, yes, but I just kept joking that I’m a cyborg now (not that she would get that at this age). Anyway, feel free to tell her that I’ve done it twice and it really wasn’t bad. Didn’t hurt a bit. The only hard part was trying to sleep with it, because I’m really fussy about how I sleep. Oh, and I didn’t like not being able to shower the next morning. I even took mine jogging and tried to trigger an episode (no luck, and that meant I was even stinkier with no shower). Happy to talk to her about it if she wants.

    • Ness, I didn’t know you’d done this. I trust/hope everything is okay? Fortunately, Charlotte sleeps quicly and easily. Unfortunately, I haven’t washed her hair since Tuesday, so it will be grimey tomorrow.
      I’ll say “robot” instead of “cyborg” and she’ll get that!
      Thanks.

  2. Pingback: Cardio Report | Charlotte's Journey Home

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s