Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Cardiology–continued update

First, thank you, dear readers, for your emails and phone calls. Like the cardiology checkups, the blog evolved over the past few years into a different sort of communication, like an online scrapbook. When we were jolted back into the role of active “heart parents,” Charlotte’s journey took a new turn and the blog has been, I suppose, returned to its original purpose.

Charlotte will be fitted tomorrow with a Holter monitor. This is a tiny EKG machine that she will wear for about 24 hours. It tracks her rhythms over the course of a regular day, allowing Dr. Young to get a more detailed, more natural,picture than she can get from the five or ten minute stressful EKG in the hospital.

I don’t think Charlotte will be nearly as smiley tomorrow as she was in February, 2009. She told me today that the only thing worse than the stickers used to attach EKG leads is a strep test. She had one of those today (it was negative), so hopefully tomorrow will be easier than last week’s EKG. Especially because Philippe is taking her!

Dr. Young spoke with Dr. Jeffrey Gossett, the cardiac interventionist, today. He recommends we do a lung perfusion test as well. In case you don’t remember my March 4, 2010 post (!), here’s my answer your burning question, “What is a lung perfusion test?”

The machine looks something like an MRI. The patient has a dye injected into their blood that allows the camera to “see” the blood as it flows through the veins. For Dr. Young this replicates by camera what the Doeppler does via soundwaves, with the added bonus of guaranteeing that she can see everything she needs to. The test takes about 45 minutes, during which time the patient needs to lie still.

When Charlotte was in junior kindergarden, she bravely held still for the IV (maybe it’s just an injection) and then lay still for the perfusion study. She had Bubba, Driving Puppy, and a movie and she was SO brave. Frankly, I think she didn’t know any better. She didn’t even complain about being hot. Look at the bright pink cheeks and turtleneck sweater and you’ll see how inappropriately I dressed her for the occasion. (But, so cute, I know.)

This time, she’s terrified of the IV or injection, though I’m not sure she really knows what one is. She doesn’t think she’ll be able to lie still. Dr. Young asked if she’d need sedation. I responded that I think she may.  Charlotte and I talked about it and now…well, now Charlotte is going to add “sedation” to her new word log for English. (Along with “traumatize,” but that’s another story for another day. Really.)

After the lung perfusion (on another day),  Dr. Gossett will do the cardiac catheterization “to assess her hemodynamics and see if there is any intervention that could be provided to relieve any discrete area of obstruction should there be one.” That’s fancy talk for: we really hope that if any intervention is necessary a balloon procedure or stent will be adequate to improve any dynamics issues, and/or correct any narrowing or stenosis of the conduit or the artery.

I have every confidence in Dr. Gossett. Though he has not treated Charlotte, I met him a few years ago when I had the privilege to tour the new cardiac catheter lab that was funded by a Children’s Service Board commitment. As I said to Dr. Young today, if he can manage a bunch of giddy philanthropists as well as he did that night, he must have a wonderful bedside manner with children.

Charlotte is very scared. She doesn’t want to talk about this with her friends just yet, but we’re talking about doing a presentation to her class so that she can answer any questions all at once. (Thanks, Esther.) I have to talk to her teachers about this. Also, Charlotte is going to compile a list of questions for Dr. Gossett and then “interview” him for Charlotte’s Corner.

We had hoped not to have to think about any of this for another 5 or 6 years. I think we have been in some kind of denial about this being an ongoing condition, not a repair-and-done kind of thing. Right now, we have no idea what will happen after this flurry of tests and exams. With any luck, the catheterization will be the beginning and end of this saga for another long while.

I told Charlotte today to think of it like a tune up. She misinterpreted and started talking about it being like tuning an instrument. I suppose that works, too.


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The 365th Day: A Cardiology Update

 

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.

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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.

 

 


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Important enough, I think, to post twice.

Culture Bean

 In March, Culture Husband and I celebrated our anniversary with a night in a posh hotel near Battery Park City.  We ended our trip with a visit to the 9/11 Memorial. Somehow it seemed appropriate, even necessary, to visit the memorial and remember even as we celebrated.

The atmosphere was eerily like the memorials on the beaches of Normandy–all obvious signs of the destruction, horror, and blood are gone. But there is something in the air and light, in the way other visitors walk slowly and whisper, in the quiet, respectful aura of this place despite the hustle and noise of the surrounding city that took our breath away.

We thought we knew what to expect, at least in terms of what the memorials would look like. We’d read about the waterfalls flowing into holes placed where the foundations of the towers were. But nothing can truly prepare you for…

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Introducing Bob the Betta Fish

This is Bob.

On the first day of school, Mommy promised me a fish. After my eye doctor appointment, we went to PetSmart for my betta fish. I asked the saleslady where the fish were. She showed me to an aisle where all the betta fish were. She told me the rules and responsibilities of having a fish. She explained to Mommy that the fish needed a bowl, gravel, a plant, food, and a little tablet that conditions the water.  I chose a dragonscale betta because, I don’t know why.

We named him Bob the Betta and took him home.

We put the bowl water and Bob in his container in the same room so they could become the same temperature. Once they were the same temperature, we put Bob in his bowl. We put his bowl in my room, on my dresser so that the cats couldn’t get him. Then I fed him his little pellets. The pellets were so small that I couldn’t believe he only had to eat three or four in a day.

I will feed him every day and night.

Hurray for Bob!


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I have never posted anyone else’s story here, but Charlotte’s. But the beauty of WordPress is that it allows me to bring the story of other children and the parents who share their journeys easily and, I hope, powerfully. Please read my online friend Deborah’s post about how Donna’s Cancer Story changed her life. Then, in honor of Childhood Cancer Awareness month, and in honor of my cousin Lindsey who has fought (and won!) cancer before finishing her first year of college, start reading Donna’s story at HuffPost. You’ll need to read it day by day for the rest of the month. Or, if you need to dice right in, go to the original.
You’ll need a box of tissues.