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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A Day in the Life of Truncus Arteriosus Repair #3 (#CHDAware)

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7:30 a.m. February 12. Calm after a pre-op dose of Versed

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@3:30 p.m. February 11, 2014. Intermittently sleeping post-op.

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4:45 p.m. February 11, 2014. Breathing tube came out. First words were deemed “appropriate” by Dr. Jate: “Finally. Now, would you all get out of my face?” (And in case you can’t tell, she’s smiling in this photo)

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8:00 a.m. February 12, 2014. That really is a smile. And a new doll. The gifts seem to arrive hourly. (Thanks, Julie & Chris!) (Again, that’s a smile.)

 

 

 

 

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Throw-Back Thursday, Or Countdown & Flashback to Surgery

Charlotte has been counting the days until her surgery. Last week, nearly every ride to school started with “20 days,” “19 days,” etc. Phil’s theory is that she is putting her life “on hold” until it is over and so that’s why she’s counting.

Another theory (mine) is that counting is her way of controlling the situation. In addition to counting, she came home one day last week with a sheet of paper on which she had written “Hospital Schedule, Day #1.” It was precious:

9:30 Wake up

9:31 Kiss m&d

9:45-11:30 Surgery

11:45-1:30 Watch a movie

I thought about this for a few days and then asked her about it. ¬†She said it made her feel better to have a plan for the day so she wouldn’t get bored. I explained that the surgery would likely take more than an hour and forty-five minutes (Dr. Backer is a genius, but not a magician!) and that she might not be up for a movie afterword. She was, in a word, crushed. Until I told her could watch two movies on day two.

This morning Charlotte didn’t count down, so I did. I mentioned that in two weeks from today, the surgery would be over and she would be recovering. We talked about how day #1 of recovery might be the worst of it, like when you fall and the next day you feel really achy. Then she changed subjects (let’s face it Hasbro’s Equestria Girls is ever-so-much more exciting!).

In honor of Throwback Thursday, pictures of Charlotte on Day #1 of Recovery in 2005 and 2007.

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Cheating a little here–this may be just hours after the surgery.

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And this cute photo is day #2 of recovery in 2005. Her little scars ended up being so tiny that they were eventually covered with Snoopy bandaids.

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Day #2 2007

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Heart Update

Charlotte had her first post-surgical cardiology visit with Dr. Young.

Dr. Young was quite pleased with her progress: She’s gained weight since her surgery (at the pediatrician’s last week she topped out at 26 lbs.). Her heart sounds good and there is only a slight “swish,” mostly the sound of blood through the conduit. No regurgitation sounds. And, her chest x-rays looked good.

Princess Charlotte getting ready for her x-ray.

Charlotte was a trooper–she smiled for the camera during her x-ray and most of her EKG. My secret weapon? The camera. Little Miss Diva-in-Training loves having her picture taken. So, we explain that the x-ray machine is a camera and so is the EKG machine.

Also, having a wonderful technician who thinks to have Charlotte help put the stickers and lead on. Pure genious.

Finally, a smile. That wasn’t so bad, was it Charlotte?


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Recovery Day #2: Another Day, Another Milestone (or 3)

“Okay, I was cute with the oxygen cannula, but I’m so much cuter without it.”

Today, Charlotte’s doctors okayed the removal of her oxygen, arterial IV, one peripheral, and all IV medications. She still sports one peripheral IV (on her foot), a venus port (being used only for medications and not IV drip) and three chest tubes.

The removal of the chest tubes was delayed due to her high level of activity (between midnight and two a.m. when she woke up to play. Oy vey.). All the wiggling caused the medistinal tube to drain more blood than had been happening so we’re waiting a day to let that settle (which it has).

Charlotte and her celebrity surprise visitor, Uncle Hal! Mom has the best brother in the world.

She’s been released to the cardiac recovery, but as of 9 p.m tonight they did not have a bed for her. She’s sound asleep so I’m praying that no bed will free up until tomorrow a.m. or that the doctors will have the good sense not to wake her since I don’t think they desperately need her PICU bed. I know moving to the floor is a huge milestone. But, it is also a huge drag as the rooms are tiny and shared, the floor is understaffed (though the staff they have is excellent) and it seriously not a good place for rest and healing. The less time we can spend there the better.

What a big girl, holding still for the echocardiogram. Let’s get a good picture of that heart!

In fact, the 5th floor has become one of my major motivations for being involved in hospital fundraising. We need a new building.

I’m on Philippe’s laptop and grabbed the wrong connector, so I apologize for no pictures. Will do my best to rectify that tomorrow. Suffice it to say, when she’s not overtired, Charlotte is all giggles and smiles. Her fortitude is an inspiration.


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Recovery Day #1

In a nutshell: Charlotte “rocks!” as Dr. Jason Kane, the intensivist on service, said this afternoon.

Today the docs have:

  • Removed Charlotte’s bladder probe (an uncomfortable catheter thing that takes an internal body temperature near the bladder. Yuck.)
  • Removed her Foley catheter and reinserted her MICKey button
  • Stopped all IV drip meds except for a small dose of Milrinone
  • Pretty much stopped Morphine (because Tylenol works better for Charlotte)
  • Released Charlotte to her home diet


Today Charlotte has:

  • Drunk 360 mls of Pedialyte without coaxing
  • Drunk 100+ mls of Pediasure and tolerated another 80 mls through her g-tube
  • Eaten about 1 teaspoon each of chicken and mashed potatoes and a whole string bean
  • Hammed it up for the camera (I’m in the hospital computer room without my camera or laptop, so pictures to come)
  • Asked to “atch Elmo” (and, yes, Daddy ran home to get the DVD for her!)
  • Said “Bye Bye Jenny” to Julie Creadon
  • Blew kisses to the volunteers who visited
  • Shown her truly bright, vital, funny personality
  • Warmed our hearts

Thanks for your calls, emails, and warm thoughts. More tomorrow…..


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10:15 p.m.: Charlotte is My Hero

Charlotte has weathered her PICU recovery like a trooper so far. She is on very few drugs: Tylenol for pain and a slight fever, a heart drug I forget, and morphine as needed.

We got in to see her, as Philippe wrote, around 3:15 p.m. She was in and out of it, mostly out, very woozy, but not in too much visible discomfort. Around 4 (I think) the doctors decreased the ventilator enough that Charlotte was “driving” the breathing and the ventilator was assisting her. They took her off the morphine drip to help her wake up a bit and see if she was ready to be extubated.

And, at 8:00 p.m., the tube came out. Charlotte is breathing on her own. She was quite uncomfortable at first, very “cry-cry,” reaching for Bubba and our hands. Her little cry was pathetic due to the sore throat that the tube leave behind. Then Hector (her night nurse) asked if she wanted to roll onto her side. She said, “Yeah” with wan enthusiasm. It was music to our ears.

Dr. Deena and Hector decided to give her a dose of morphine to calm her down and Philippe and I took a quick dinner break. A little plug: We dined at The Red Lion on Lincoln, one of Chicago’s legendary watering holes. The barkeep/owner Colin was delightful and we had a well needed break.

When we returned, Charlotte was peacefully asleep, Elmo in her arms (she asked Hector for Elmo, G-d bless her!). Philippe sent me home to get a good night sleep. Super dad is spending the night with Sprout.