Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Feverish Scare (All is FIne)

Reading the Sunday New York Times

Charlotte woke up from her nap on Tuesday with a 102.3 degree fever. Yikes. That’s the highest fever I can recall her having had, ever. After checking to make sure that none of her wounds looked infected, I immediately stripped her down to her onesie, gave her some Tylenol, settled onto the couch with baby in my lap, and called the Cardiac Recovery unit.

The CV APN on duty was confident that I’d done everything I could and that there was no major problem. To be thorough, however, she had us come in early for our post-op appointment. Charlotte still had a fever when she went to bed, but by Wednesday morning (yesterday), it had broken.

Yesterday (instead of Friday), we went to the hospital to see Julie. I was delightfully surprised that Charlotte did not scream the minute we walked into to the place. Julie thought everything looked good. She ruled out an ear infection, wound infections, and a cold. To be on the safe side, she had us go to the lab for blood tests to rule out any infections that wouldn’t be visible to the eye (staph, blood infections, etc.).

No more steri-strips or bandaids.

We learned in the late afternoon that the blood looks good. We’re waiting for the culture results to come back today, but we’re doubting we’ll find anything bad.

Charlotte is still running a little hot, especially at night. But we’ve been told several times that “valve kids” can run a fever for a week or forever. As long as it is a low-grade fever, it’s okay.

As you can see, Charlotte has no idea she had major surgery a week ago. She’s quite obsessed, however, with the “boo boo” from the peripheral IV on the back of her right hand. It’s pretty cute: “Mommy tish boo boo? Daddy tish boo boo, too?” Ah, toddlermania. Such fun.

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Recovery Day #4: The Details

First of all, Charlotte was released from the hospital on Sunday, her fourth post-surgery day. Many of you gathered as much from the picture, but just as many were confused. So, yes, she’s home.

Here’s what the day looked like:

The “flock of docks,” Dr. Backer, Dr. Young, and Dr. Wu (cardiology fellow) and Susie came by in the late morning to do rounds. Dr. Backer came into the room grinning from ear to ear and cracking jokes, clearly pleased to see Charlotte’s progress (and his fabulous handiwork). They took one look at Charlotte and said, “Go home.”

Okay, what they really said was, “Are you comfortable taking her home?” YES!! We can deal better with her feeding her properly at home. And, she’s ready. In fact, she’s asking “Home?” for the first time since the surgery.

So, they ordered a chest x-ray and said if it came back clear we could leave.


Charlotte and Bubba smiled for a chest x-ray. (She smiled a second after I snapped this, but the lighting was bad.)

Then Charlotte ate lunch and took a long nap. Really long. We toured the available real estate in the area after eating brunch.

Then Charlotte took her first wobbly steps

Susie came and gave us the all clear on the x-ray. She also gave us post-op instructions. Much to Philippe’s delight, Charlotte is no longer taking Digoxin. She remains on Pepcid and Zyrtec (for her reflux–no reason for the heart doctors to change that). We’ve added a daily dose of baby aspirin; research shows that aspirin may prolong the life of the valve.

We have to follow sternal precautions meaning we cannot pick her up under her arms (we have to cradle her or make a chair with our arms) and she cannot lift her arms too high. We have to avoid groups of children for at least 2 weeks. And, the hardest part, we have to avoid situations where she could easily fall for at least 6 weeks–so no playground.

Then we packed up and went home. Charlotte took a walk with Mom & Dad. Then she took a little nap.

Then she settled back into the house as if she’d never left. She even slipped right back into her sleep routine.

This is very good. This is very, very good. (okay, some of you even know the tune to this song, right?!)


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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.


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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.