Chicago Dance Marathon

For years I’ve been aware of the Northwestern University Dance Marathon, mostly when my students ask for extensions on assignments because they will be dancing. (I can’t say no; they’re doing philanthropic work and you know how I feel about that!) This year, my niece solicited my support of her involvement with the self-proclaimed biggest of all collegiate Dance Marathon’s, the one and only Penn State ‘Thon. But, I never thought I’d get involved in one.
And then we got an email from Children’s Memorial Foundation asking us to tell Charlotte’s story to a roomful of dancers at the first-ever post-collegiate, off-campus Dance Marathon.
The Chicago Dance Marathon was a direct outgrowth of collegiate dance marathons. Its boardmembers come from Big 10 schools. From what I can tell, they were so moved by the good done by their collegiate dance marathons that they wanted to continue the good work. They are affiliated with the Children’s Miracle Network, and through that have chosen Children’s Memorial Hospital as their beneficiary.
The dancers began their 13.1 hours at 8 a.m. on Saturday, March 6. We arrived at the McCormick Place Hyatt around 3:30 and were delighted by set up for participating families–there was a room filled with snacks and craft supplies, volunteers to help us, and a ballroom filled with enthusiastic dancers and the children they were helping.

No idea who was “Shaking for Charlotte,” but I thought it was wonderful that there was a poster for every child whose story was told. (Of course, there may have been a team dancing for another Charlotte, but I like to think she’s the only Charlotte.)

At 4:20 we took the stage. My knees were knocking as I read the (very) abbreviated version of Charlotte’s story that we shared. I fought back the tears as I spoke of her surgeries and Children’s incredible nursing care. Philippe did a great job ad-libbing off my too-prepared schpiel. I think Charlotte was just delighted to see her baby pictures on display!

Charlotte’s friend Trudy brought her parents to cheer us on (Thanks, Bruce, for the photos). Her mom realized that she didn’t think of Charlotte as anything but a regular kid and playmate when Trudy started asking questions about “what’s that in Charlotte’s mouth?” (the breathing tube). The girls enjoyed another hour of dancing, playing, and painting before we took them home for pizza and cupcakes.

The unofficial tally: The first-ever Chicago Dance Marathon for Children’s raised nearly $250,000! The organization thinks this may be a record for an inaugural event.

Cardiac Follow Up: Lung Perfusion Exam

Back in August, 2009 Charlotte went for her periodic check up with her cardiologist Dr. Young. At the time, Dr. Young was unable to get a clear picture of Charlotte’s right pulmonary artery. Since this is the arterial trunk that had constriction leading to her second surgery and had a special surgical procedure done to add elasticity to it (my word,s, not the medical terminology), she asked us to schedule Charlotte for a lung perfusion test. Between school schedules and the hospital’s schedule, we were finally able to get it done last week. (Clearly it was not urgent, though very important.)
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. The 4 3/4 year old patient!

Charlotte and I arrived at 9:00 a.m. Friday morning. In one of our best-ever experiences with the Radiology Department waiting room, we were called back to the Nuclear Medicine imaging room within about 10 minutes.

Our technician Steph explained the procedure to Charlotte. She and Charlotte had Bubba check out the machine first. Bubba had to be reassured, Steph told Charlotte, because he might be scared. Only Charlotte could make him brave.

The trickiest part is numbing the hand or arm for the IV and then inserting the needle. That’s the only “owie” and the part that scares Charlotte. She had two major concerns, “Please no bandaids” and “When can I watch my movie?”

To ease Charlotte and me through the IV procedure, Steph had Emily from the Child Life Department walk us through the numbing and needle. She brought an “IV teaching kit” and demonstrated what would happen. Then she sat with us the whole time.

Our biggest trauma was that Charlotte’s vein didn’t like the “popper,” an air delivery system of Lidicaine which forces the medicine through the skin with a strong blow of air. After the “popper” the IV went in easily but there was blood in the draw back. What does that mean? When Steph pulled the needle back to check the IV placement, blood came back. For Charlotte it meant that we had to pull the first IV out and start again. She screamed, and rightly so. I blinked back tears. We both blew bubbles and watched Emily to avoid the needle.

Charlotte earned a bravery certificate:

I earned a few more gray hairs!

After Steph pushed the dye through the IV, she pulled the IV and Charlotte settled onto the table for the part she came for: watching 101 Dalmations (Betcha thought I was going to say Mary Poppins!).

Charlotte’s point of view during the test. She was actually irritated when the test was over because she hadn’t gotten to watch the movie to the end. (And she was hungry.)

There have been some incredible process improvement since Charlotte’s last lung perfusion test June, 2006). To begin with, Nuclear Medicine has a new, beautiful room within the radiology suite. It is bright, cheerful yellow; that in itself is a major improvement over the putty gray from last time. Even better, the machine is new. Rather than the donut that Charlotte had to be slid into, the new machine features two large rectangular cameras that angle around the patient, leaving lots of open space. To get the 360 degree view, these big rectangular cameras are rotated 60 degrees every 5 minutes. In one view, Charlotte is completely visible and not penned in at all. (I’m trying to find the last post and photos of the lung perfusion; stay tuned for an update to this post with a link.)Finally, and hands down Charlotte’s favorite part, the screen the technician uses for positioning and checking the medicine doubles as a video monitor.

Charlotte did tell me over lunch that she “didn’t want to do that again soon.” Who can blame her, really? But she was, as always, braver than brave.

My hat off to Steph, Emily and the digital imaging student. They made this a truly painless, happy 90 minutes or so.

Medical Update: Myringotomy and Tympanostomy Tubes

In her quest to become a regular kid, Charlotte has been plagued since the beginning of pre-school with regular kid health concerns. She had so many ear infections during the school year that I truly lost count.

After consulting with her pediatrician, Dr. Newport, and her otolaryngologist, Dr. Billings, we decided to move forward with a myringotomy and the placement of tympanostomy tubes. Lots of fancy words to say that her ENT decided she needed tubes in her ears. Essentially, Dr. Billings planned to ventilate Charlotte’s inner ear by making a tiny incision in the ear drum and then make the ventilation “permanent” by placing the tubes.

The original plan had been to do this in August so as not to miss camp. But, Charlotte asked me to move the date up and “get her ears fixed” because she’s has a great deal of intermittent discomfort.

Bright and early this morning, we woke Charlotte up and took her to Children’s Memorial Hospital. She was delighted to head out in her pajamas, but quite distressed to be skipping breakfast. (Yes, you read that right!)

Our appointment was for 8:45 a.m. Per instructions, we arrived at 7:15 a.m. and waited to be called to the surgical suite. Once we were there, Nurse George heard Charlotte asking for a room with a window–he arranged that. Room number 8, her favorite number.

Nurse George doing Charlotte’s pre-op exam. Charlotte’s post-op RN was Nurse Tim. Two guys in one day. Wonders never cease!
After all the pre-surgical stuff (temperature, height, weight), the anesthesiologist walked us through his procedures and cautions. Given that this procedure requires about 10 minutes of laughing gas (more or less), we didn’t have to hear the dire warnings about possible serious negative outcomes of anesthesia. Nevertheless, having your kid put under general anesthesia–gas or IV, for a heart procedure or tubes or tonsillectomy–is quite nerve-racking.

Dr. Billings answered our questions. Here’s Charlotte’s question: “Will the tubes feel poky or sharp or like water in my ears?” Dr. Billings answer: “Nope!”

Dr. Billings listened intently to Charlotte’s question. The picture was overexposed, so here’s a shot of her walking us through post-op instructions.

Charlotte asked me to go with her to the operating room, so I suited up. As she puffed into the orange-scented mask (her choice of scent; I thought it smelled like orange cleaning fluid), the nurse suggested she try to make the balloon attached to the mask pop. Groggy and getting irritated by the medication (normal reaction), Charlotte whipped off her mask and said, “I don’t like when balloons pop!”
I sat with her until she was too goofy to know I left, her eyes rolling back in her head for the final sleep. My heart was pounding.

I met Philippe and we went to the waiting room. I need to pause and note that Carol, the waiting room attendant, has been at CMH for at least 4 years. She remembered us and asked how Charlotte was doing. What seriously amazing customer service.

Literally 10 minutes later, Dr. Billings came in to tell us that it was all done, Charlotte was in recovery, and that it had gone well. So well, in fact, that she cut the post-surgery ear drops by one day. I think that most of the lingering fluid (what had sent us to her to begin with) in Charlotte’s ear finally cleared up last week, to tell you the truth.

Charlotte woke up gradually, but happily. She was a bit grumpy because she was hungry, but ready to go.

We were on our way home by 9:00.

We were supposed to have her rest this morning. So, we watched about 30 minutes of The Sound of Music and read a stack of books. I’ve got a great video of more “resting” that I’ll try to post tomorrow. Charlotte ate a huge lunch and took a 3 hour nap.

Back to camp tomorrow, just a regular kid!

Trick or Treat

I didn’t get to go trick or treating with Charlotte last year because of my teaching schedule. I was really disappointed. So, of course I was terribly excited to take her out this year. Lucky me, she wanted to wear the same costume as last year and it still fit. She was talking about going trick or treating “with mommy” all day, so I think she was pretty jazzed, too. Philippe is in Germany for business, so he missed out this year. These pictures are for you, Diddy!

Charlotte is dressed as a “bubba doctor” (Bubba is Charlotte’s bear and also the generic affectionate term she uses for all bears), sporting Children’s Memorial Hospital scrubs given to her by friends at the Children’s Memorial Foundation just before her second heart surgery. (No, I can’t resist a plug for the hospital! That’s a link to the online donation form for the Children’s Service Board.)

Hitting up the neighbors with her buddy Taylor. Yes, Charlotte is VERY tall, but T is about 8 months younger and no shrimp herself!

We headed out in Lincoln Square with Charlotte’s buddy Taylor. The girls were very excited to go to each house and get more candy, but not so sure about knocking on the doors by themselves.

At around 6 p.m. Charlotte had a meltdown about wanting to get on with it and go to more houses for more candy. I quickly realized that it was a dinnertime meltdown so I had to cut our afternoon with friends short and drag the poor thing home. It was not my best mom moment, involving yelling at her in public and dragging her (literally) back to the car. By the time we got home, all was well and we hit two neighbors’ homes en route to dinner. Charlotte was very excited to see our neighbor’s dog dressed as a pumpkin, but she is still talking about how she didn’t really like the skull with moving eyes in our next door neighbors‘ candy bowl.

She was practically too tired to eat dinner (but not to eat candy!). Dinner took forever because Charlotte stopped to yell “Happy Halloween!” and “You’re welcome!” to all of the Trick or Treaters who came to our house while she was eating.

When Charlotte finally went to sleep, I recovered with our traditional Halloween treat–cocktails on the front porch with our favorite neighbors, Richard, Cynthia, and Marcy. It’s the one time a year I see Marcy. We had some serious fun involving a radio-activated rat and gals walking to the neighborhood bars.

I think she’s a bit sad to see all the Halloween decorations come down. She’s been enjoying all the different spiders in the neighborhood!

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!

Children’s Memorial Hospital: New Doc On Staff?

I am sad to report that I missed the first Halloween that meant anything to Charlotte. I was busy teaching (and I let one of my students leave early so she could take her kids trick or treating because I was sad to miss Charlotte’s first outing).

But, as you can see, Charlotte had a blast with her gal pal Karley. Here’s what Karley had to say about Halloween with Charlotte:

We went trick-or-treating across the street, she loved it! She got a lolly pop
from someone that she wouldn’t let out of her site once we got home.

I heard from Karley and Philippe that Charlotte was so excited for trick-or-treaters, too. She gave them candy and when they left, asked to see more. In fact, yesterday morning she was still looking for trick-or-treaters.
Charlotte’s costume was a gift from our friends at the Children’s Memorial Foundation. She’s not just a doctor, she’s a bubba doctor. She has already declared that she’ll be a bubba doctor again next year.

All photographs (c) Karley Beery, October 2007

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.

Children’s Memorial (New) Hospital Update (& blatant appeal!)

Many of you (who live in Chicago) may already know that Children’s Memorial Hospital is in the midst of planning an incredible improvement to our plant and facilities–we will be building a brand new hospital, adjacent to the new Prentiss Women’s Hospital at Northwestern Memorial Hospital. CMH will remain a completely independent entity, but the proximity to NMH will benefit patients in terms of proximity for research collaboration as well as the maternity ward.

Once the hospital opens in 2012, mom like me will not have to be miles away from their children while mom recovers from birth and newborn gets critical care.

Kids like Charlotte will benefit greatly from having pediatricians able to easily collaborate with adult specialists. As care and corrections for congential heart defects has improved, the U.S. now has more adults with CHD than children. As I’ve heard a lot of heart folks say, “It’s a great problem to have!” And it means we need to learn more about how to ease kids like ours into adulthood.

Here are some specs on the new hospital:
– There will be 276 inpatient beds in the new hospital. That is a 12% increase from quantity of beds now. However, it will give us a 25-30% increase in Patient Day Capacity. This is because all of the rooms are private – therefore, there will be no restrictions on who can occupy a room.

– Each new room will be 290 square feet and private – with room for the patient, their families and the doctors/nurses. Currently, the rooms are 125
square feet with multiple beds. Huge improvement!!

– There will be 25 procedure rooms – compared with 20 today. There will be
42 bay emergency rooms – compared to 26 today.

– The hospital will be 21 stories. There will be a sky lobby on around the 14th floor. There will be an outside garden area.

An endeavor like this is impossible without philanthropy. Please think about clicking here and participating in this amazing improvement for our already incredible pediatric care in Chicago. There is an area where you can “earmark” your donation for the new hospital or any medical service that compels you.

Recovery Day #3: Released from PICU & Wireless

Charlotte has officially been transferred from the PICU to the 5th floor cardiac recovery unit. She’s in room 586, bed 1. Her PICU nurse Naomi was sad to see her go. Charlotte was so peppy and playful–she provided a real ray of sunshine in the PICU.

She had her chest tubes removed this morning. I’m sure it was uncomfortable, but she was a real trooper. We’ve also had the peripheral IV removed from her foot and are hoping she’ll have the strength to walk tomorrow.

She’s eating gang busters, but reflux reared its ugly head again this afternoon.

On the fifth floor Charlotte gets to eat in a high chair. Actually, Mom thinks she prefers lolling around in bed with milk and cookies.

And she’s still running a low-grade fever that seems to have Mom & Dad more worried than anyone else.

Mobile and running for Mayor of the Cardiac Recovery Unit.

On the 5th floor she still has monitors attached to her chest, but she’s got a wireless monitor. We got to visit the Child-Life Center this afternoon for Charlotte to play with the train table and color at a table.