Please Help Me Make History for Lurie Children’s and Charlotte

In just over two weeks, I’ll walk on stage with my irreplaceable co-chair Tommy Horowitz Sheridan​ to welcome an audience of 1,015 to the 60th Annual Gold Coast Fashion Award Show. As a grateful parent, I couldn’t be more honored to have had the chance to pull together our first evening event. It is going to be a glamorous evening of celebration (yes, that means open bar) that you won’t want to miss—come as a couple or gather a group of friends. We are well on our way to breaking all of our previous fundraising records, and to a sellout event.

GCFAS_Invite Cover_Outlined

As you’ve heard me say, probably ad nauseum, Ann & Robert H. Lurie Children’s Hospital of Chicago​serves all of our children, from all legislative districts in Illinois, all 50 states and 48 countries. And if you don’t have kids, you know the hospital serves your neighbors, nieces/ nephews, students….all the kids you love.

Please join me in making history for Lurie Children’s—buy a ticket at http://www.gcfas.com and we can toast our efforts together. Can’t attend? Go to http://www.gcfas.com and buy a raffle ticket or make a donation!

There are fewer than 215 tickets left and they are going fast. Get yours now!

Thanks for all of your support over the past two years. I couldn’t have done any of it without you!

Sometimes You Look In the Rearview Mirror

Charlotte is off at her first full day of fifth grade. How did that happen? No, really, where did the time go?

I’ve been a negligent blogger, largely because co-chairing the 60th Gold Coast Fashion Award Show has taken more time than anticipated because we’re inventing an entirely new event. We’re in the home stretch and as I did some research to fact check our program book, I came across the following post.  It’s been a long time since I did an A-Z post, but if I had to write a new one, it wouldn’t be much different than what follows. I’m certainly less angry and weary, but the emotional response to Charlotte’s medical complexity still lies below the surface. I don’t think about it often because I’m way too busy hanging with my 5’1″, funny, sweet, happy FIFTH GRADER. How lucky are we?

(Your reward for reading the whole thing? Photos, of course!)

How I Am, From A to Z, On Charlotte’s 5 Month Birthday

Continue reading

Back to School, But Not Quite Back to Normal

Have you ever seen a conquering queen returned to her castle? It must look something like Charlotte’s reception at school yesterday. As soon as her classmates saw her turn the corner at the top of the stairs, several girls came running toward her to envelope her in hugs. As we approached the classroom, the crowd parted to let her pass. Her classmates peppered her with questions and other fourth graders stared and smiled. My heart swelled. It nearly burst when her teacher jumped out of her chair to give Charlotte a hug.  She was thrilled to be back at school, and school was clearly happy to have her back.

IMG_5847

Charlotte hard at work on a craft project dropped of by a friend of mine. She has been so spoiled for the past 4 weeks. Thank you, everyone.

Charlotte can’t carry her backpack for another month. I don’t know if you’ve carried a fourth grade backpack recently, but Charlotte’s must weigh 15+ pounds. It triggered the seatbelt alarm in my car this morning.  So, I walk her upstairs every day. In an effort not to disrupt class too much, I’ve asked for her to have help bringing it to the office. Her desk mates and dear friends Taylor and Annamaria have been helping, with big smiles on their faces. I suspect that will grow old eventually, but I so appreciate their support of our kiddo.

The APN suggested that Charlotte start back to school half days for a week or two. I picked her up at 11:30 a.m. and she was happy to see me, yawning all the way home. She didn’t nap, but she was definitely exhausted.

Same drill today. She wasn’t as tired when I picked her up, but our 1.5 hour wait at the pediatrician (for a post-surgery follow up) took the rest of her energy and she was in bed, fast asleep, by 7:32.

Still, she’s on her way back to her regular routine. And she couldn’t be happier about it.

Pediatrician appointment was truly unremarkable, except that Charlotte is now 59.75 inches tall. Look out, Jamie!

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).

IMG_0712

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.)

IMG_0711

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.

DSCN1393

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.)

Charlotte’s Story: The Road to a Healthy Heart

Sometimes I’m so proud of my kiddo, I could just burst. This is one of those moments. She was asked earlier this month if she would contribute a blog post to “Life Inside Lurie Children’s: The Official Blog of Ann & Robert H. Lurie Children’s Hospital.” Despite the month she knew she had planned, she said yes. And she said it without hesitation.  We talked a lot about what she’d write, but she didn’t start drafting it until February 14, just 3 days after her surgery. She dictated it to me.

So without further, ado, I invite you to follow the link below to read Charlotte’s Story: The Road to a Healthy Heart.

A Day In the Life of Cardiac Surgery Recovery

IMG_0698

Why homeschooling at our house will never be a long term commitment.

IMG_0699

Qwirkle

IMG_0700

Mom’s Remedy

IMG_0701

More Quirkle

IMG_0705

More trash talking, I mean, more Qwirkle.

In all seriousness, Charlotte has been handling her confinement with aplomb. She’s been trying to get her schoolwork done without too much complaining, playing board games, reading, and practicing the piano a lot (it’s good for her post-surgery posture recovery!). And pretty much every night at 7:36 she says, “I need to go to bed. Now.” Then she sleeps for about 12 hours.

We finally went for a walk around the block yesterday–had to wait until the below-zero temperatures subsided. She also had a visit from a school friend yesterday. Today, another school friend visit plus a haircut (with a one block walk to/from the car) led to Charlotte abandoning a game of Qwirkle midway through for a nap. Charlotte never naps. It’s kind of against all of her principles (silly girl). But today, she passed out for about two hours, waking up only because Phil tempted her with wonton soup and we let her watch some of the Oscars (well, we let her sit in front of the t.v. and play video games on her iPod).

She’s running a  low-grade fever today–the first we’ve noticed. It’s only 99.1F so, we’re not too worried, but we’ll keep an eye on it.

She’s gotten all of her bandages off, except the surgistrips on the big incision, which the APN will take off on Tuesday.

Medical Update 6 Days Post Surgery

Current StatusSitting in the living room playing Katamino waiting for sushi to be delivered.

Medical UpdateSitting in the living room playing Katamino waiting for sushi to be delivered.

But seriously, Charlotte was discharged around 2:30 today. The day consisted of removing the central line, which was a bit difficult but not nearly as traumatic and traumatizing as any other removal has been. In between crying that she couldn’t do it, Charlotte breathed (deep breath in, breath out “sushi”), and  giggled at Despicable Me 2. Once the central line was removed, she had to lie flat-ish for about 30 minutes. Then we went downstairs for a chest x-ray.

After the chest x-ray, we waited for the prescription delivery and to get the last peripheral IV out.  That last thing is what took the longest, and what made me the most proud.

Charlotte hates having things put in or taken out (can you blame her?) and she also dislikes having medical teams hover around her.

So, she insisted on taking the PIV out herself. Her excellent RN, Katie, sat on one side of the bed, Phil an I on the other. While Katie walked us through the discharge instructions, Charlotte worked on the tegaderm surrounding the IV. She worked and worked, listening to some Katy Perry and Taylor Swift. She vacillated between “I can’t do this” and “I’ve got this.”  The last little bit was really difficult. Both Katie and then Holly, the APN on duty, helped Charlotte strategize how to approach the tape.

Finally, she got all worked up, “I can’t do this. I’m never going to be able to do this.” Then silence, then “Oh, it’s out.”

She did. The sushi is here. Have a good night, ya’ll.

DSCN1234

Charlotte heads home wearing sweat pants and fancy boots. Best combination ever. (Caption credit: Charlotte)

 

 

 

Medical Update 5 Days Post Surgery (#CHDAware)

Current status: Charlotte that her current status is “Awesome as usual.” Clearly, her ego has recovered 🙂 She’s weaning herself from all things “i” and spent the morning on a craft project sent by a most excellent pair of twin 10 year olds. They also sent stuffed versions of what Charlotte misses most from home.With Ty Fred and Ginger

 

 

Medical update: The writing of this blog post was interrupted for…the removal of the chest tubes! Charlotte was a bit anxious about it so we medicated her. The Versed kicked in right after the tubes came out so she is blissfully listening to Taylor Swift right now and telling me how good her lemonade is.

After chest tubes were removed, Charlotte had an x-ray. She needs an echo. With normal results on those two things her central line should come out tomorrow and then we get to go home!

DSCN1216

Let me check out my lung x-ray. I can see the wire around the conduit. Cool. (Umm….no comments about my bed head, please!)

In the meantime, she’s been taking bigger and bigger walks. One big goal was to visit the Founder’s Board Treehouse on the 12th floor.DSCN1220

 

Mission accomplished! Lindsay, the APN on duty today, believes Charlotte won’t remember this visit or photo, so we’ll go again later.

We’re down to Lasix once a day, baby aspirin, pain meds as needed and Miralax. While she will go home with a few meds, nothing is long term.

On a sad note, Bubba’s nose is falling off. We’ve had to call in reinforcements. Introducing “the spare bear.”

DSCN1215Today’s cheery update brought to you by the “Flock of Docs.” That’s Dr. Backer all the way to the left. He’s pretty happy about today’s news!

Flock of Docs

Medical Update 3 Days Post Repair (#CHDAware)

Current Status: Charlotte slept for the better part of 8 hours last night, only waking when the x-ray tech came at 4 a.m. Now, while I dislike the 4 a.m. x-ray, I love that it comes to here. So much less disruption than when we had to wheel her to the medical imaging suite. And she (and I) fell back to sleep easily. Since she didn’t move in her sleep, she woke up achey and super grumpy. Then breakfast took a long time to arrive. Then her visitor couldn’t come onto the floor before 10 a.m. The first few hours of Valentine’s Day were not good.

Now, however, Charlotte is watching a movie with her BFF Phoebe (who everyone thinks is an adult so she can come into the hospital. While in measure of years she is definitely over 18, in spirit she is a wonderful combination of 26 and 9. They are perfect together!)

Medical Update: Charlotte’s oxygen saturation plummeted during her sleep. Her magical night nurse managed to get the oxygen cannula into her nose without waking Charlotte up and easily remedied the situation.

Overnight, Charlotte’s right chest tube started draining more again, and darker. That means that the chest tubes can’t come out until tomorrow, which may mean that we’re not going home until Monday. Not our favorite news, but we understand. (Charlotte won’t, so we haven’t told her yet.)

She did get up and walk yesterday. In fact, last night she voluntarily sat up when Rabbi Conover came for Shabbat and then ate dinner sitting in the chair. She then walked to a window at the far end of the ward, about 100 yards. She was pooped afterwords, but we were so proud.

Dilaudid has been stopped and Charlotte is on one pain med regularly, another as needed, baby aspirin and Lasix.

Acquisitions UpdateI have to note that since arriving here, Charlotte has acquired 3 new blankets, 5 new stuffed animals, dolls, books, countless handmade valentines, game, activities, cookies,  and I don’t know what else. Different volunteer groups have created Valentine goodies for the children. One of the blankets came from Mended Little Hearts with a whole tote bag of goodies. I am humbled by the generosity of volunteers and families that give back in an effort to make children’s hospital stays more comfortable And I am grateful to our friends and family who are keeping Charlotte in their thoughts and prayers. Gifts are so NOT necessary, as you all know.

She naps. We soldier on.

 

9:17 (#CHDAware)

Update #2: The APN just updated us. Anesthesia got Charlotte all settled in and Dr. Backer made the incision at 9:17 a.m. (CT). Now he’ll excise 8 years of scar tissue before he gets her on the heart-lung machine and begins the wait.

Stay tuned…