Charlotte Speaks Up — A Heart Update

We’ve always told Charlotte that she will eventually be able to read her body and tell us when it has time to go to the doctor. We just never thought it would happen before she hit adolescence. But, Charlotte has been a self-aware and observant child from the beginning, so I guess we should have been prepared.

C on stage GCFAS

A week or so ago, Charlotte told me that she had had chest pains after running hard during a game of tag. I asked if it felt like her usual chest pains* (typically caused by reflux). She said no. She mentioned it again the next day and I asked if she was concerned. She said, “Not concerned. Worried.”In the past month, she  has reported being tired after thirty minutes of horseback riding (at her level it is seriously not that strenuous a sport) and slept for 13 hours the first night of her October vacation.  I have no doubt something is going on. So, I shot an email to her cardiologist and we’ll be going in for her check up next week–5 months earlier than anticipated. Needless to say, Philippe and I are now worried, too.

Charlotte’s last intervention was a cardiac catheterization and balloon procedure in October 2012. Drs. Gossett and Young  both told us that while the procedure was incredibly successful, it might buy us a few years (or 2 to 3 years, depending on who remembers the conversation) until we’d need to talk about surgery, or some other intervention. We’re just past 2 years on that intervention.

To put this in perspective–which I am desperately trying to do–Charlotte’s last repair was in March 2007. She was 20 months old. She bounced back after surgery beautifully and grew 4 inches almost overnight. It was evident how necessary the surgery was when we saw her renewed energy and sudden growth, not to mention her quick weaning from the g-tube.  The anesthesiologist at the time told us he’d never seen a conduit that large put in a small child and that he was sure the repair could last for a long, long time. Even close to 10 years. Well, we’re close to 8 years on that repair.

We don’t know what we’re in for, other than the roller coaster ride of remembering that our jewel is a heart patient and always will be. It’s not all she is, not by a long shot. But her heart, both literally and metaphorically, defines our family in so many ways. Sometimes, like this week, it defines our focus. Sometimes, like in the photo of Charlotte on stage at the Gold Coast Fashion Award Show in September, it defines our philanthropic bent.  That’s the literal heart, of course. As I work to keep things in perspective, I’m reminded that her metaphorical heart truly defines us by reminding us that there is wonder in the world, compassion in great droves when you least expect it, and laughter to help heal all things.

Please keep Charlotte in your thoughts this week.

Six Month Checkup or Remember? Charlotte is a Heart Patient

Back in October I reported that Charlotte’s heart was doing well, but not as well as we would all like.  Dr. Young asked us to come back in six months to see if the numbers, specifically the diameter of her conduit and the gradient blood flow into the right pulmonary artery, were holding steady.  As the appointed date of the check up drew near, I once again held my breath. Charlotte has been growing like a weed and she’s been more tired than usual, The combination didn’t, in my mind, bode well.

DSCN0309

November 2013: Phil’s goofy beard courtesy of “Moovember”

Last week, I roused Charlotte earlier than usual and we headed to Lurie Children’s Hospital for our 7:30 a.m. appointment. Charlotte had an EKG and an echocardiogram, as usual.  The pressure across her conduit measured at a 52 degree gradient. With blood pressure at 100, that means that her gradient is about half of her systemic blood pressure.  It is roughly the same as our September visit and a bit higher than Dr. Young would like. Since her EKG and echo looked about the same; neither the valve nor the conduit seemed to be leaking; and there was nothing in her physical exam to cause alarm, Dr. Young said we could come back in a year for our next check up.  When that gradient hits 60 or above, we’ll have to discuss another catheterization and, possibly, a “conduit revision.”

Good thing Charlotte didn’t quite pick up that “conduit revision” means surgery; she was too busy telling us how horrible her leg felt after the last catheter procedure and that the only good thing about that night in the hospital has been that she got to eat breakfast for dinner (score 1 for the 24 hour “room service” at the new hospital!).

My heart thumped in my throat when I heard “conduit revision.” When she was a baby, she wasn’t scared. It's Almost Moving Day! Prepare to be AMAZED.She just toddled in to the hospital, charmed everyone around her, woke up groggy but smiling, and kind of forgot the whole thing rather quickly. Now, my lovely almost 9-year-old will get it and be scared.  And I fear the day she hears Dr. Young say that it’s time to consult with Dr. Gossett and Dr. Backer.

This is Charlotte’s reality–she will need more heart surgery, probably sooner rather than later.  In January 2005, Dr. Cuneo of RUSH Northshore told us that she might need as many as 3 valve and conduit replacements. She estimated–based on growth spurts–18 months, 7 years, and adolescence.  We eked out to 20 months and 7 years old is long since passed. So, I hold my breath and probably will continue to do so until it’s time to forge ahead, and be strong for Charlotte’s sake.

Now, for the important numbers: Since her last check up (remember, October 2013) Charlotte has grown TWO INCHES. She is now 4’9″. (Or was last week. I think she sprouted again recently.)

And now a word for our sponsor: Join Charlotte, Philippe, and I as we Move for the Kids on May 18. Team Charlotte will join the Children’s Service Board and work to make the CSB the leading fundraising affiliated organization for the third year in a row. I’d love for Team Charlotte to lead the charge–so if you even if can’t walk, please click on the image below and make a donation in honor of Charlotte, or your own favorite heart patient :-). We’ve built a new hospital and now we need to keep the philanthropic funds coming in to assure that Lurie Children’s Hospital continues to be one of the best in the country. Thanks!

Measuring Up, or Heart by the Numbers

We measure Charlotte in many of the same units that most parents measure their kids–inches and pounds (or centimeters and kilograms). We measure her life, as most parents do, in units of years, whether her own years or school years.

As of August we now also measure her in terms of percent of spinal curvature as we track her juvenile idiopathic scoliosis.

Mostly, though, we hold our breath for the one to two times a year when we measure her by the opening of her pulmonary conduit and the velocity of her blood flow. These are the measurements that remind us that Charlotte will be a heart patient for the rest of her life. These are the measures for which we hold our breath and after which, most of the time, we give a deep sigh of relief and then have lengthy, nervous conversation with Charlotte’s cardiologist. How many parents worry about their child’s blood flow velocity or medial measurements? More than I’d like to think about, I’m sure. But it still gives me pause each time we visit the incomparable Dr. Luciana Young. These are the measures that have led me to measure my life by our contributions to Lurie Children’s Hospital (more about that later!).

That time of year came again last week.

Lurie Children's Hospital Photo Op Spot-(9/26/2013)

Lurie Children’s Hospital Photo Op Spot(9/26/2013)

The good news is that Charlotte’s measurements have not changed since her February checkup. The sobering news is that her measurements, specifically the diameter of her conduit, are good, but not as good as Dr. Young would like to see them.  The cardiac catheterization last October did a great job, quadrupling the size of the opening. However, she continues to have stenosis in the conduit.  We’re hopeful that her numbers will remain stable for a while. (I didn’t write down the actual numbers. If you’re dying of curiosity, I’m sure we can get them.)

If not, we’ll talk to Dr. Gossett and pray that another catheterization or even a stent procedure can buy us time until the next repair.  Truly, eight years old is proving to be an emotionally delicate age and I worry that the need for further medical intervention could be quite traumatic for Charlotte. So, these will be the numbers for which I’ll hold my breath in February and pray that we’ll have bought another year–another year of growth and another year of maturity and understanding.

For now, we watch and wait. Next check up in 6 months.

Meanwhile, for the truly astounding numbers: Charlotte has grown 2 inches since July! She measures in at an astounding 4’7”. She’s no longer the very tallest in her class, but her height continues to stun me.

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.

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.

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.

 

 

Cardiology Update

First picture taken with my new camera. Thanks, Philippe!

Most of the time, Charlotte is just Charlotte–funny, sassy, smart, and sweet as honey. Most of the time, I see her scars as you see your child’s freckle, or the scar from their skateboard crash. In other words, scars are just part of who she is. At bath time I see her big scar, however, and some part of my brain registers all that it means.

About once a year, we are reminded in full force of the meaning of all of her scars, what they have brought us, and what we (and she) will have to endure for the rest of her life.

That time came a few weeks ago when Charlotte had her cardiology check up with her new Boston cardiologist, Dr. Lucy Arnold. It was a bittersweet meeting–we LOVE Dr. Young and have been her patient (me, too) since 2005. Change doesn’t come easy. But, Dr. Arnold was recommended by our pediatrician, Dr. Mitchell, and we quickly understood why.

That’s Charlotte’s heart on the screen. And, yes, there’s Bubba, ever-present.

We had two appointments. At the first, Charlotte had her EKG and a physical exam. When Dr. Arnold entered the room, Charlotte was having a full out tantrum because she can’t stand the EKG stickers. The stickers connect twelve leads to the machine which, in turn, creates an image of the electrical changes in her heart by measuring the electrical impulses in each heartbeat. The stickers are very sticky and taking them off has not, in the past, been easy. But, you can imagine that a hissy fit can affect the reading. The longer she fusses, the longer the test goes on. Dr. Arnold managed to calm her down very quickly. I got the sense, however, that Dr. Arnold might have thought Charlotte was spoiled or that I wasn’t effective at handling her. While I liked her manner with Charlotte, I was worried about her impression of us.

Everything looked good upon the first exam so we schedule the follow up appointment with for an echo cardiogram. I spent about a month working with Charlotte to make sure that Dr. Arnold’s second impression of her was better than the first. Charlotte walked in smiling, hopped up on the table, and cooperated gleefully, all the while chatting about her school day.

Dr. Arnold brought a student technician and narrated the entire 45 minute exam, talking about truncus arteriosus and Charlotte’s particularities. She also answered Charlotte’s questions, such as:
“Why does the image show blue and red?” The different colors indicate the direction in which the blood is flowing (not oxygenated/deoxygenated, as I had thought), so that the doctor can see that it is flowing where it should and when it should.
“What does a valve do?” It works like a door, opening and closing to let the blood in when it should come in.
Charlotte was calm and happy the whole time, only getting antsy in the last 5 minutes or so. And Dr. Arnold was terrific with her.

The hero of the day, however, was Maria, the technician. When the exam was over, Charlotte took a deep breath and started to cry and fuss about taking off the three stickers from the echo leads. I tried reasoning with her about how much less sticky they are than the EKG ones. We were about to leave it that they could soak off in the bath (really just a delay tactic as they don’t soak as well as band aids). Maria walked over with the sonogram gel and said, “I have a trick for the stickers.” As she explained her trick, she squirted some gel on and around the lead and it slipped right off. Charlotte was protesting, “No, I don’t want to try that,” but it was already done. So Charlotte let Maria take off the other two as well.

I think Charlotte (and hopefully me, too) made a much better second impression on Dr. Arnold. I know we were as happy, if not happier, the second visit, too.

Now, you’re wondering, what about her heart? Well, rest assured if there were big news, I’d have led with that! From her initial impressions, Dr. Arnold sees slight stenosis in the pulmonary artery, but nothing that is affecting blood flow yet. Other than that, all the heart functions look healthy. We’re still awaiting the “official” report, but it all looks normal (for Charlotte) for now.

Cardiac Update

Cardiac Update:
Charlotte had her semi-annual cardiology appointment today. (I like to call this the “Remember, she’s a heart patient?” appointment. )

She weighed in at 15.4 k and measured 41 inches (104 cm). Her electrocardiogram (EKG) was normal despite the fact that she cried and coughed through the whole thing.

Dr. Young wants to see her in about 9 months. She’ll have to have an echo and a 24-hour halter monitor (portable EKG). So, now you know our plans for spring break!

And that, my friends, is the Cardiac Update in toto. Did you ever think it could be so short?

Now for the Cardiac Appointment Hi-Jinx Report:
Charlotte tried so hard to be brave during her EKG, but the minute Amber started putting the leads on her legs she began to cry. Crying led to flemmy coughing due to her ear infection. She fussed the whole time.

Once she was calm after the test, we did some coloring. Charlotte stopped coloring and put the crayons in the crook of her bent knees. She then proceeded to tell me that we were pretending the crayons were EKG leads. “We have to put them in kind of slowly,” she said “and then pull them out fast.” Over and over and over. The backs of her knees are covered with blue crayon polka dots.

Right now she’s listening to my heart (with her real stethoscope) and watching Finding Nemo (for the umpteenth time).

Cardiac Update

It’s been a long time since we’ve had a real medical or heart update here at Charlotte’s Journey Home. That, of course, is a very good thing.

Charlotte and I visited Dr. Young, Charlotte’s cardiologist, today. It has been 6 months since our last check up. I’m thrilled that Charlotte is doing so well, but we do miss seeing our friend Dr. Young more often. She’s been a constant since our pregnancy and is very much a leader of Team Charlotte.

Charlotte flew through her exam with flying colors. She had an EKG and an echocardiogram. She started crying when I pulled the 10 EKG stickers off of her and cried on and off through the entire 45 minutes of the echo. It was very stressful.
The bottom line is this: despite being hysterical during much of the tests, her heart looked just fine. Dr. Young gave me all of the technical information about blood flow velocity and distribution–I used to understand it, write it down, and note progress. Today I nodded, noted that it was all good, and moved on. You see, while it all started with her heart, the reflux and eating issues have become so much more a part of our daily existence.

Anyway, Dr. Young originally said she didn’t have to see Charlotte for a year, then nine months, then finally we decided six months. You see, we decided we couldn’t wait nine months to see each other!

Then we came home and “got fancy.” One of Charlotte’s new best books is Fancy Nancy!

Cardiac Update

Charlotte saw Dr. Young on Friday for her 6-month cardiac check up. Dr. Young was delighted with her progress. The short version: nothing has changed since the surgery, meaning that all of her blood flow is adequate, her TR velocities are as expected, and (best of all in my book) there is no regurgitation in the new valve.

She has been officially taken off of Lasix and aspirin. Good thing about the aspirin since I forgot to give it to her most of the time.

Dr. Young sent us home with a halter monitor to get a 24-hour read of Charlotte’s heart. Here is a picture of the halter monitor (or as Charlotte calls it “little monitor”) in it’s “disco bag.” And here is a picture with the 5 leads. Charlotte had to sleep with this. She only complained when we took the leads off because the glue was painful to remove. And she’s still talking about Pauline, the technician who put the little monitor on. We’re not really sure if the reading worked because Philippe noticed on Saturday that Charlotte figured out how to push the only button on the monitor, the on/off button! I guess the hospital will call and let me know. Little urchin.She is 13. 4 kilos and 93 cm., both measurements up enormously since the surgery. Prior to surgery she weighed 11-something kilos. She’s gained 6 pounds since March and grown +2 cms. She’s pretty tall.

Charlotte amazed me at her check up. She did not cry at all. She stuck it out during the EKG, including the tough part of pulling 10 super-sticky tabs off of her chest. She stared at her red glowing toe while we took her pulse ox (measure oxygen in the blood taken through a little monitor affixed to her toe); and she lay perfectly still (seriously) for 45 minutes during her echocardiogram. It was as peaceful and relaxing as a trip to the cardiologist with one’s two-year old might be.

Next visit in six months.