Charlotte's Journey Home

Just a Regular Kid, Sort Of


1 Comment

“Will I Have Another Scar?” or Fact vs. Truth

Charlotte will have her cardiac catheterization tomorrow morning at 9:30 CST.  The last time she had a cardiac cath, in 2009, it led to her second heart surgery.  This is probably the one fact of the last catheterization that I have withheld from her.  We’ve told her that the worst-scenario outcome is another surgery, but we haven’t told her that that’s what happened last time. To say that I’m nervous would probably be to understate the obvious.  Beyond the anxiety that any parent feels when their child undergoes anesthesia, for no matter how short or routine a procedure, add the anxiety about her heart and another surgery.

She has a lost of questions for Dr. Gossett that I hope he’ll have time (and patience!) to answer before the procedure.  Among those is, “Will I have another scar?”  She really doesn’t want any more scars, though she’s quick to say that she’s proud of the scars she has.

This question led me to search for an essay I started several years back and, I’m embarrassed to say, never finished.  I’ll share here the “work in (halted) progress”:

Charlotte’s Scar

Every summer morning, I insist that Charlotte puts on her suntan lotion before she gets dressed.  She likes to help, so I give her the Waterbabies Sunblock Stick. Looking in the mirror, she carefully covers her face with sunscreen and then begins to paint a line down her chest, tracing her scar.  “Especially the scar,” she says, repeating my mantra from the summer she was two, the summer after her second open-heart surgery. Now that she is four, she knows she has a scar and she takes care of it herself.

Like most children her age, Charlotte loves to look at her baby photos and hear about her first few months on earth.  To her, the pictures of an 8-day old with a breathing tube, multiple IV lines, chest drainage tubes, and a bandage on her chest are totally normal. She’s not frightened by them. She can explain that she had splint on her wrists to prevent her baby movements from pulling out the IVs. She will recount that as the pictures progress, showing fewer tubes and wires and monitors, it means that the baby was getting better. Mostly she looks for the moment when Bubba, her beloved bear, appears at the foot of the hospital crib.  To her, this is a normal babyhood. I think she’d be surprised to know that it was very different from that most of her friends experienced. In fact, I recently asked her to tell an acquaintance why she had the scar on her chest and she said, “I don’t remember.”

It is remarkable to me that she has no idea how remarkable she is, how exceptional her existence is.  As a survivor of the congenital heart defect Truncus Arteriosus Type I, Charlotte benefited from a heart repair that is scarcely forty-five years old.  Her defect was diagnosed when I was only twenty-two weeks pregnant.

Today, Charlotte knows how remarkable she is, but I’m still not sure she truly understands it. She is at once proud of her scar and self-conscious about it: She’ll wear shirts that show it, but doesn’t want anyone to ask questions about it.  She likes being different, I suppose, but doesn’t want to have to explain why she’s different. I’m not sure what she really says about her heart and health at school. She says she tells her friend Taylor all about it, but no one else. We talk often about how to answer or deflect questions as simply as possible, with the minimal relay of information (unless she wants to give more). For instance, when her deskmate asked why she was late the day of the lung perfusion, the answer was, “I had a doctor’s appointment.”  She wants to tell the truth; I explain that “the truth” doesn’t have to include every detail. There was, in fact, a doctor in the room last Monday, so her answer was true. Of course, I wonder if I’m teaching her ways to tell me the “truth” without giving me the facts, something which could be handy for her as a teenager.

When the nurse called with the procedure time and instructions for tomorrow’s procedures, Charlotte was in the car and heard the conversation. She was quite unhappy at the prospect of “no food or drink after 6:30 a.m.” and began to throw a tantrum.  I staved it off, pointing out that none of us were happy about the procedure, but that it is simply a fact of who she is. “We all have to get through the day,” I told her, promising that her dad and I wouldn’t eat either and that we could leave through the front door and not the kitchen.

One day I’ll finish the essay I started about her scar. And maybe I’ll write that picture book that will help other children explain and understand their own scares.  The problem, as I see it, is that there is no complete truth about her scar that satisfies. That scar (and all the others) are part of who she is, they are the bare facts of her being and her continued existence. Simply put, without them, she wouldn’t be here.

The facts are the facts, but the truth lies in her feelings about her scar and the facts it represents.


2 Comments

Cardiology Update: Lung Perfusion

Charlotte had her lung perfusion on Monday.  The lung perfusion is an imaging test that uses a contrast dye to track the how her blood is pumping from her heart through her lungs. It measures, as I understand it, both velocity and concentration. Drs. Gossett and Young will use the readings from this test to determine what to look for with the cardiac catheterization and, after that, as part of a totality of evidence from which to decide next steps in general.

The picture looks like uncharted stars on a night sky.  Dr. Jarrod Green, the radiology fellow, explained that they would create mathematical measurements to understand the volume and velocity of blood pumping to her arteries.  Jamie, the nuclear medicine technologist, explained that once the photos were all taken, she would center and arrange them so that each showed the lungs in the identical place in the image, which would also match up to Charlotte’s other lung perfusion tests.  The idea is not only to get a picture of current conditions, but also to tell a story and see how today’s picture fits in.

We scheduled the test for first thing in the morning with the intention that Charlotte would go to school afterward.  For a week leading up to the test, Charlotte was quite nervous. She swung between asking a lot of questions and asking me not to mention it. But, yesterday morning, she got up, ate breakfast, and went chatting to the car like it was any other day. I was quite struck that she had few “game day” jitters, to be honest.

We arrived at Lurie Children’s at about 8:10 for our 8:30 appointment.  We were taken back to the imaging lab within minutes and the whole process started early.  First, Charlotte had to be weighed so the nuclear medicine lab could concoct the dye.

Emily, the wonderful child life specialist, and Jackie, the nuclear imaging technologist, set about explaining the test to Charlotte–the numbing of her arm, the IV and medicine, and the lying still for 45 minutes while sandwiched between two enormous cameras. Charlotte only wanted to know when they could get on with so she could start her movie (Harry Potter and the Sorcerer’s Stone).

Bubba checked out the gamma ray imaging machine. He thought it was pretty comfortable.

Charlotte barely noticed the IV being inserted. She was too busy playing left-handed Brave Temple Run on Emily’s iPad. Once the worst part–the IV–was over, Charlotte was eager to get to the test.

We haven’t heard the results yet. We’ll hear more about the findings when we go for the cardiac catheter next week.

And if there isn’t enough going on, we move to our new house tomorrow!

Charlotte is a serious trooper.


3 Comments

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.

————–

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.

 

 


1 Comment

CMH Cath Lab, Or the Importance of Philanthropy

In early April, I had the distinct honor of attending the dedication of the new cardiac catheterizion lab at Children’s Memorial Hospital. Funds for the new lab were raised by the Children’s Service Board just before I joined the board. If I’m not mistaken, it took about $3 million. While I was not on the board when this gift was made, I was eager to see the new lab as Charlotte has had two cardiac catheterizations.

The new lab is inside the operating theater suite, allowing the cardiac interventionists to work even more closely with the surgeons. Because the lab is within the sterile suite, children can move from the lab directly to surgery if necessary and, if a condition proves truly emergent, surgery can occur in the lab.

Catheterizations are guided by sonogram and the camera now installed has 360 degree mobility, allowing for much more detailed views of the heart and better diagnosis as well as more precision in determining the success of a procedure.

We got to play with the IVs and other tools used for procedures such as closing VSDs, various stents, etc. (We only played with demonstration items–nothing that would be used on a kid!) Closing a VSD used to require open heart surgery; now the doctors can insert the patch via an IV, reducing the invasion into a child’s heart.

Dr. Jeffery Gossett, pictured here, delivered a wonderful presentation, then gave us a tour, and guided us through the different tools (or “toys” as he called them), showing us videos of each utensil at work. It was astounding. When we talk about the miracle of modern medicine, I think we really only know part of the story. What Dr. Gossett and his colleagues do on a daily basis takes a steady hand, intense focus, and dedication. It was a privilege to see even a little bit of his world.

Since we were all suited up in sterile gear, the nurse who coordinates the operating theaters, gave us the grand tour. I can’t tell you how moving it was to enter the operating room in which my darling girl’s heart has been repaired twice.

In case you’re wondering, the new equipment will be moved to the new hospital.

To see more and better images of our excellent catheter adventure, click here.

To learn more about the Children’s Service Board, please visit Childrensserviceboard.org.

SHAMELESS PLUG: To learn more about the new hospital and become a Hero for Life, please visit Heroesforlife.org.