Charlotte's Journey Home

Just a Regular Kid, Sort Of


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End of a Long Day

Hmmm…maybe I can be a ghost for Halloween?

Charlotte is drifting off to sleep as I type this, two hours past her bedtime, one hour past her chest xray, and about three hours after a (very) late breakfast.

My view right now: Our brave little girl, sound asleep, unperturbed by the camera flash, the chimes of the monitor, or the sounds in the hallway.

I think if she were awake, she would tell you that the worst part of the day was not being able to eat for 25 hours.  Second worst, being forced to lie on her back for six hours post-procedure, even if she got watch a “Cute-a-thon” on Animal Planet.

Here goes: After grumbling last night about how she wouldn’t be able to survive without eating breakfast, Charlotte made it to the hospital in rare form.

Eventually the serious stuff started. Vitals were taken. Charlotte weighs 26.6 kg. Then she had her blood taken. I had conveniently forgotten to tell her that would happen (after the histrionics over no solid food after midnight, I wasn’t taking any chances, folks!).  She fussed for a moment, then considered and said, “Will they take more than at the doctor’s office?” It took me a minute to remember that at her 6 year old check up she’d had quite a blood draw.  “No,” I said, “a lot less.” Boy, am I glad I was right.

After Nurse Jean listens to Charlotte’s heart, she decides to find out for herself what the big deal is. As we say in our house, “Thump, swoosh.”

Next the “sleep doctor,” Dr. Dsida came in and answered all of Charlotte’s questions about anesthesia. Her big one: How long will I be asleep? The answer: Just a bit longer than the procedure.  Dr. Dsida explained that an anesthesiologist would remain in the room the whole time to make sure she stayed asleep the whole time. He let her choose a flavor for the gas mask (cherry) and assured her that the IV would be inserted after she was asleep.

Next, Dr. Jeffrey Gossett, the interventionist responsible for the procedure came in. Boy, was he surprised by her 13+ list of questions. What I liked best was that Dr. Gossett started his answers be explaining that he wouldn’t know all the answers, not until he was doing the procedure.  He showed Charlotte his “bag of tricks” because a lot of her questions were around the instruments that he would use to take his measurements and do his magic. He deftly avoided the question about “how will you make the cut in my leg.”

Dr. Gossett explains that Charlotte was born with her “plumbing” not quite right and that he is essentially going to check out how the pipes are now and see if he can help them a bit.

Charlotte checking out a balloon.

And, off she went with Dr. Rivera, bravely kissing us good bye at the door.

Phil and I sought a comfortable waiting room and settled in. After about two hours we got the call you already know about, from Jean, informing us that Dr. Gossett had decided to go ahead with a balloon procedure (which he does only after assuring that the surgeon, Dr. Backer, is in the building and not in a tricky part of another surgery just in case of complications).

We waited another hour and there was Dr. Gossett striding across the waiting room to see us. We had settled in on the sixth floor in the surgical waiting room–warmer, no kids, and more comfortable–and he’d never been there!  He took us to a consultation room where he walked us through the procedure (more on that tomorrow), and assured us that he was happy with the results.

We found Charlotte groggy, but awake on the 15th floor, the Regenstein Cardiac Care Unit, one of the marvels of the new Ann and Robert H. Lurie Children’s Hospital. (More about that later, too.)

Bubba, always upside down and never far away.

She watched t.v. and counted the minutes until she could sit up and eat.

“Since I missed breakfast, I’ll just have chocolate milk, a Go-gurt, a waffle (only if there is syrup), oatmeal, and pudding, please.” And at 7:30 p.m., she joined the “clean plate club.” Never taking her eyes off the television, by the way.

Then, after a chest x-ray, she grabbed that trusty (and filthy) bear–who has been with her all day, even in the catheter lab–and fell into a deep sleep.

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“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.


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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.