Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Flashback #4: What does awesome mean to you? (#CHDAware)

A year ago, Charlotte declared her status to be “Awesome as usual.” Today, 370 days after her third open heart surgery, I can attest that awesome IS usual for her. And by “awesome” I mean causing feelings related to the “dread, veneration, and wonder that is inspired by authority or by the sacred or sublime,” as defined by Merriam-Wesbster. I am awed, truly, by modern medicine. When I think that had I been born with truncus arteriosis type I, I likely would not be writing this blog post, I can’t help but feel veneration for the scientists who dared to dream that they could fix a broken heart. If those surgeons want to think they are gods, well, probably they are at the very least, godlike.

Now for the Flashback: 2/15/2015: Current status: Charlotte says 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


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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


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Medical Update 1-day Post Repair (#CHDAware)

And now to answer your questions.

Our night: Last night was hard. Let me start by saying that one of the best parts of the new hospital building is the silence. There is no overhead paging. We cannot hear children in other rooms. We hear no street noise. All rooms are private. There is a day bed for a parent to sleep on. And the nurses told us that their first rule is “Never wake a sleeping baby.” And post-op kids, no matter how old, are all babies.

Nevertheless, Charlotte required intense monitoring last night. Every hour the nurse had to do a full round of checks–blood pressure, temperature, flush all her lines, strip the chest tubes, adjust meds, reset or check all the med pumps, etc. It takes about 10 minutes each time. They tried to do it without waking Charlotte, but stripping the chest tubes and drawing blood through her central line cause a kind of suction-feeling pressure that is uncomfortable, or down right painful. So she woke up and sometimes pressed her Dilaudid button.

Can she eat yet? On top of that, Charlotte was starving. She was literally begging to eat. But she vomited twice after a few ice chips and we had to go back to square one.  After she vomited two more times, her night nurse made a connection between the patient controlled analgesic (PCA; pain med with a patient-operated pump) and the vomiting–it is one of the known side effects of Dilaudid. Charlotte seemed to be vomiting within 2-5 minutes of pressing the button if she was sipping water/juice while the nurse did her checks. So, at about 3 a.m. we added Zofran, an anti-nausea medication.  Ice chips and water stayed down, at long last. And Charlotte and I both slept hard for an hour.

But she had to have a chest x-ray before the doctor would allow a liquid diet. And there are no x-ray techs available at 2 a.m. Why? Because in this amazing place, the x-ray comes to you!  So, the portable x-ray machine and its operator showed up at around 4 a.m. The x-rays immediately uploaded to the radiologist and we got clearance for a clear liquid diet.  The only problem? The kitchen wasn’t open and the cafeteria had no jello, and other than apple juice, only had red juices. Red juices are bad–if she vomits them it can look like blood. Charlotte was so over apple juice by that time.

At 7:25 we ordered “breakfast.” Then we had to wait 45 minutes for chicken broth, jello, and iced tea. Poor honey whimpered until it came–by then she hadn’t eaten in 36 hours. I’d like to say she gobbled it down. She determinedly and slowly fed herself, and was indignant when the doctors came in to do rounds. But, she ate the broth and half the jello and perked up for a while. She’s been cleared for solids, and is currently watching Rainbow Rocks and munching Sun Chips.

Medical update: Dr. Backer came by and after commenting on how pretty Charlotte’s hair looked (for real :-)) noted how pleased he was with her progress. Medically, he added a blood pressure medication temporarily to address high bp. She’ll also start an aspirin regimen today. That is designed, in “mommy translation” to keep the porcine valve clean. I’m going to get the real terminology, but had to cut the doc short because Charlotte needed the room cleared.

CCU docs came by and we learned that Charlotte’s arterial line will come out today. Her Foley catheter (pee line, as we call it) came out earlier this morning. So, if she feels like it, we should be able to get her for a short walk on the ward this afternoon.

State of mind: As I just texted a friend, Charlotte is feeling cranky and crappy. Her chest hurts. Her back hurts from lying in the same position for the past two days. She’s tired. She is hot and feels sick (she has a low grade fever, nothing to worry about). She doesn’t want visitors–even asked her favorite grown up to hold off coming today. But she was kind to our rabbi when she stopped by. She justs wants mom an dad here. That’s perfect, because we don’t want to be anywhere else. Still, she asks for what she needs, mostly nicely. She says thank you and she attempts a wan smile every now and then. Dr. Jate says she’s “appropriate” and we couldn’t agree more.

Congenital Heart Defect Facts (Thanks to the Children’s Heart Foundation):

  • There are an estimated 2,000,000 CHD survivors in the United States.
  • For the first time, more than 50% of the CHD survivors are adults.
  • 91,000 life years are lost each year in this country due to congenital heart defects.
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
  • The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
  • In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

When you support CHD research and Lurie Children’s, you support Charlotte. And we thank you!

(If you want, you can note on the donation form that your gift is in honor of Charlotte and you want it to go to the cardiac team.)

 


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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?