Charlotte's Journey Home

Just a Regular Kid, Sort Of


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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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Cardio Report

As I began last time the blog returned from a holding pattern to our primary mode of communication about Sprout’s heart, I want to start by conveying our deepest gratitude for the emails and texts you sent after my last update. It is heartwarming (pun, though bad, is intended) to know that you continue to read and check in after nearly 10 years and that you especially tune in to the truly important things.

We had an early morning appointment at Lurie Children’s yesterday morning. As usual, Charlotte had an echocardiogram and an EKG. Liz Cappella, Dr. Young’s amazing nurse practitioner who has cared for Charlotte since our PICU days, came in to take a history. We let Charlotte take the lead answering the questions and describing what she’s been feeling. The bottom line for me is that Charlotte has been feeling things in her chest and her heart that she’s never felt before. While she was matter-of-fact in her explanations, it became clear last night that she was terrified (more on that later; probably in a separate post).

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Charlotte watches “Cloudy With a Chance of Meatballs 2” during the echo. The technician (whose face I have inexpertly hidden per her request) had to keep asking Charlotte to stop laughing. Laughing, apparently, works well for photographs. Not so much for images made from sound!

 

After reading the tests, Dr. Young came in to tell us what she saw: Charlotte’s echo and EKG did indicate that the blood flow velocity through her pulmonary artery is limited and that there might be increasing stenosis. (There is more technical explanation to do with gradients and blood pressure; maybe we can get Dr. Young to post a comment and explain.)

We’ve been here before and we know the drill. This time Dr. Young is recommending more imaging prior to consulting with the cardio team, so we are waiting to schedule an MRI with contrast as well as an exercise test. Once those results are in hand, Dr. Young will conference Charlotte’s case with the whole cardio-thoracic team, including Charlotte’s surgeon, Dr. Backer; Dr. Jeffrey Gossett, the interventionist who performed the last angioplasty; doctors and nurse practitioners from cardio-thoracic surgery, cardiology, and cardiac critical care.

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Before they could get to the consultation, Charlotte and Dr. Young played Spelltower. Doc was quickly addicted and started batting Charlotte’s hand away from the screen. There’s a reason we love our cardiologist.

The bottom line, however, is clear: Charlotte will need an intervention. She will either have angioplasty or a full open-chest repair to replace the Dacron conduit, and probably the valve.

I’ll update more later with a compete download of the blood draw drama as well as Charlotte’s day of terror (from which she learned to put the iPad down and ask questions while mom and dad talk to the doctor).

I want to end on a personal note and congratulate Dr. Luciana Young on her promotion to full professor. If anyone has worked hard to earn that title, it is our friend and hero Luciana.



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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.