Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Post-Surgery Appointment (#CHDAware), or One More Step Back Toward Regular

It’s hard to believe that Charlotte has been home for nearly a week and that her surgery was two weeks ago. As long as the hospital stay felt at the time, it has faded into memory in some ways. (Though it was odd to go back to the 15th floor for a Children’s Service Board meeting last week, two days after she was released.)

We returned to Lurie Children’s on Tuesday for Charlotte’s post-surgical visit with the Advance Practice Nurse (APN), the most excellent Holly Adams (with a guest visit by Lindsay Jackson).

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In addition to removing her own bandages, Charlotte listened to her own heart. She says it sounds different than it did. The thump-swoosh rhythm seems stronger and faster. (Mom forgot her camera and the phone didn’t so well with hospital lighting.)

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I’m pleased to say that there is nothing of importance to report!  Charlotte is only on one prescription medication, Lasix. That dose was reduced by 50%, to be continued until we see Dr. Young in March. She continues to take Miralax and baby aspirin, the latter until we see Dr. Young and the former until at least our visit with the pediatrician next week.

Charlotte had already removed all the tegaderm bandages (on the arterial line, one failed PIV poke, and–yuckiest of all for her–the chest tube wounds). All that remained were the surgistrips over the wound.

Holly and I watched as Charlotte took the bandages off herself, slowly and deliberately and with strong intention. Unlike 2007, I did not take a photo of this scar for public sharing. It looks a lot better than it did at her first post-op visit in 2007.

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First post op visit March 2007. Skin still irritated from tegaderm around IV points and scar is dark pink. In February 2015, tegaderm irritation is all gone and scar is already light pink

 

Bottom line: Charlotte has been released from cardio-vascular surgical care. Her next hospital visit will be with Dr. Young. Her next post-op visit will be with her pediatrician.

She has been cleared to return to school on Monday with the recommendation that she do half days until we understand how tired she gets. (We’ve been hoping to build her stamina with walks, but the weather has not been cooperating.)

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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.

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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!


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It’s Almost Moving Day! Prepare to be AMAZED.

Not our moving day. That’s not for another (gasp) 3 weeks or so. But, Children’s Memorial Hospital will be moving to its new home in the Streeterville neighborhood of Chicago on June 9.

On Monday, June 4, the ribbon was cut on the new building and CMH officially became the Ann and Robert H. Lurie Children’s Hospital of Chicago.  Though we didn’t attend that ribbon-cutting, Charlotte and I did get stuck in the traffic it created while we were in town on a house-hunting trip.

ABCNews Chicago covered the event. Please click here to check out the opening, and even more interesting, the plans to move up to 200 critically ill patients about 3 miles down the road in 20+ ambulances on Saturday. It’s extraordinary.

While we are thrilled about the opening of the new hospital, and proud to have played a small role through the Children’s Service Board, we recognize how many parents and families mourn the loss of the facility in which they saw their child’s last smile or held a beloved baby through a last breath.  As I wrote to Mary Tyler Mom in response to her loving elegy for the old CMH, the hand that her Donna saw as a beacon of hope will now light up Streeterville in a vivid tribute to the families and children whose lives have been touched since Julia Foster Porter opened an 8-bed hospital cottage, the Maurice Porter Memorial, at Halsted and Belden.

What better tribute to the memory of Ms. Porter, and of the children who passed through those hallowed halls, than to celebrate 125 years of pediatric medical excellence with the opening of the Ann and Robert H. Lurie Children’s Hospital of Chicago?  I think Ms. Porter would approve.

Thank you, Team Charlotte, for your unflagging support of our family’s journey. Charlotte is happy to be “going home” to Chicago and to “her” hospital.

No mention of the hospital can be complete without a pitch. Here’s a link to Team Charlotte’s page at Give Kids a Hand. To date, you have helped me raise $7,155 for Lurie’s. In honor of MTM’s Donna and Ms. Porter and all who dared to dream that pediatric medical excellence had a home in Chicago, won’t you help me make it an even $10,000?

Keep scrolling for some Children’s Memorial Hospital memories:

Where we began. May 10 (0r so) 2005. Before surgery.
May 16, 2005 after surgery. That’s Charlotte under all those tubes and wires.

Charlotte (18 months) “poses” for an x-ray. They only way we could get her to stop crying was to have her smile for the camera. (2007)



Nurse Julie with sleepy Charlotte pre-second surgery. (2007) 
The only good thing about Radiology’s waiting area…the kinetic sculpture. 

Fascinated by the bandaid over her blood draw poke. Last bandaid Charlotte tolerated, I think.

Waiting (and waiting) for Dr. Backer to come get her for surgery.  Ultimately, we went back the next day. Charlotte was a trooper.

Post-op, 2007.

Uncle Hal just couldn’t stay away (2007).

The PICU Guardians. Yes, Bubba used to be a lovely (clean) golden color and sit up straight (2005).

Lung scan with IV (and video to watch). Not fun. (2008)
Certificate of Bravery for above. Charlotte rocks. And CMH staff knows how to help her through it all.


 Charlotte helps Dance Marathon Chicago get psyched (2010). She loves “her” hospital and likes helping raise money for it.

Spring, 2010.
Lurie Children’s Hospital Lego(tm) Structure, Children’s Service Board Security Desk, 11th floor, Ann and Robert H. Lurie Children’s Hospital (2012)


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Give Kids a Hand

Click here to Give Kids a Hand for Team Charlotte
For nearly 130 years, Children’s Memorial Hospital has provided brilliant pediatric care to the children of Chicago, Illinois, and the world. A bit of history from the hospital website:

Children’s Memorial was founded in 1882 by Julia Foster Porter near the site of the present hospital in an eight-room cottage. Mrs. Porter established the hospital in memory of her 13-year-old son, Maurice, who died of acute rheumatism. Children’s Memorial was the first hospital in Chicago dedicated solely to the care of children, at a time when the field of pediatric medicine did not even exist.

The hospital will celebrate its 130th anniversary by opening a state-of-the-art facility in the Streeterville neighborhood of Chicago. The adjacency of the Prentice Women’s Hospital will mean that women like me will not need to be separated from their sick children. Instead of a three-mile distance that I was unable to cross while I convalesced from a c-section, I would be able to visit my infant in the PICU in a wheelchair rolled across a bridge connecting the two hospitals.

An even greater impact, especially for children like Charlotte, will be the ease of collaboration between pediatric and adult specialists at Children’s and Northwestern Memorial Hospital. These collaborations occur today, of course. But, now, researchers and physicians will be on the same campus, facilitating even greater and faster collaborations.

As I’ve heard Pat Magoon, Children’s visionary CEO, say, we are in an age of beautiful problems–children with heart defects, cystic fibrosis, spina bifida, and other historically mortal health problems are living into adulthood. But, they are still treated by pediatric specialists since adult doctors have never dealt with their problems. (We saw a 30-something-year old in the PICU for a heart surgery in 2005.) The new Lurie Children’s Hospital will begin to bridge that gap.

One of my colleagues on the Children’s Service Board, Holly Duran, has said for years that Children’s offers 5-star healthcare in a 2-star building in Lincoln Park. The new hospital will put children, doctors, nurses, and other healthcare workers in the building they deserve. It will allow for better care, better recruiting of top doctors, and better access for all children.
Children’s Memorial may be located in Chicago. But, it is a world-class medical institution that treats children from all over. In 2011, the hospital treated more than 148,000 children representing every state in the nation and 33 countries. The Lurie Children’s Hospital will have more beds and be able to treat even more children.

As this season of joy, generosity, and cheer draws to an end, I would like to ask you, the followers of Charlotte’s Journey Home, to join us as we continue to help make the Ann and Robert H. Lurie Children’s Hospital of Chicago a reality. We hope to raise at least $1,000 in the name of Team Charlotte and earn her name on a tile mosaic in the hospital lobby. No amount is too small, and of course, no amount is too large. Follow this link (and make sure you land on a page that says “Team Charlotte” at the top).

Alternatively, follow this link and choose “Support a Fundraiser” in the left-hand nav. Then choose the radio button for “Search for a Team” and type in Team Charlotte. Click on the link for the team and choose “Support Team Charlotte” from the right-hand nav.

From our very grateful family to yours, best wishes for a healthy 2012.


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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!