Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Home Sweet Home

It is amazing what a difference being at home and sleeping in her own bed makes. Charlotte has had two nights of uninterrupted sleep, 12 hours a night. She’s eating well and all systems are working properly, if you know what I mean.

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Taken with my phone, so not as sharp as it should be. Charlotte demonstrates the power of dry shampoo.

 

We have to be careful about keeping the surgistrips on her incision dry, but she was able to take a bath (with about 5 inches of water) on Tuesday night and has pulled off the big sticker that velcroed wires to her leg during surgery. She still has some bandages over her chest tube and central line sites. Her goal is to get those off by her APN visit next week.

Generally, she seems to be in no pain, just occasional discomfort. Her posture is hunched, crooked and concave. I’m hoping that improves quickly. To that end, I am encouraging lots of piano playing as she sits beautifully on the piano bench. As soon as the tundra-like weather lets up a little, we’re going to get out and walk every day. In the meantime, homework, piano, boardgames (with a lot of trash talk. Who is this kid?), movies, and lots of reading. She’s happy as a clam, and not too bored yet!

Happy Year of the Goat!


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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.

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

 

 

 


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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!

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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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Shabbat Shalom (#CHDAware)

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When Rabbi Conover asked yesterday what she could do for us, Philippe had the genius idea to ask her to help us celebrate Shabbat. Thanks, Phil, for realizing that bringing our family tradition to the hospital would make us all feel more at home. Charlotte sat up voluntarily, smiled at the sight of the candles and challah and we all benefitted from the rabbi’s blessing and the light she always shines on us.

Somewhere my father is smiling on us. I know he is. And in New Jersey, Massachusetts, Virginia and Georgia, I know the rest of the family is, too.

Charlotte’s interventionist cardiologist stopped by to say hi as we finished. Both he and our nurse said, “I smell challah. Sorry to have missed your celebration.”

Shabbat Shalom, ya’ll.

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On and Off the Heart Bypass Machine (#CHDAware)

Update #3: Charlotte was put on the heart bypass machine and the repair began around 11:20 (CT). The APN just left us with this update–angioplasty has been performed on the RPA (right pulmonary artery) to alleviate the constricted blood flow. The conduit has been replaced to address the stenosis there. Dr. Backer is now performing an echo to check the heart and valve function and then will ease her off the bypass machine and let her heart take over again.  (Or he’ll take her off bypass and then do the echo). At this point, we think that they are leaving the valve–at last check it was competent so there was no need to replace it.

Next, Dr. Backer will “dry” the area and watch. And watch. And watch. Basically, he’ll watch for up to two hours to make sure there is no bleeding and, I think, that the valve truly is  competent now that it has blood flow at full volume and velocity.

So far, thank goodness, it’s been a textbook day, no complications and no arrhythmias.

We’re appreciating all of your texts, calls, emails and FB messages. Please continue to forgive us if we don’t respond super quickly.

It’s Congenital Heart Defect Awareness Week, so I’ll leave you with a few important CGD facts:

  • CHDs are the most common birth defects. CHDs occur in almost 1% of births
  • Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive.
  • Most causes of CHDs are unknown. Only 15-20% of all CHDs are related to known genetic conditions.
  • In 2009, the hospital cost for roughly 27,000 hospital stays for children treated primarily for CHDs in the U.S. was nearly $1.5 billion. In the same year, hospital cost for roughly 12,000 hospital stays of adults treated primarily for CHD was at least $280 million.

You can help. Support CHD research. By supporting CHD research and Lurie Children’s, you’re supporting Charlotte!


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Ready, Set, Wait….

When our phone rings at 1:22 in the morning, we answer it. Largely because Philippe’s mom is not doing well.  This morning it was a call from the CCU (Cardiac Care Unit) telling us that Dr. Backer, Charlotte’s surgeon, had to postpone the surgery until tomorrow (Wednesday) because an emergency had come up.

I listened, took mental notes, and hung up. Philippe asked me three times if I was sure of what I heard and if I was sure that it really was the CCU. I thought, “Because a prank call at 1:22 in the morning would be so specific as to cancel your daughter’s heart surgery?!”  But, I pulled the number up on caller ID and dialed it. Maybe the night nurse thought I was nuts, I don’t know. She found the gentleman who called me and he confirmed that I had heard correctly.

We rolled over and went back to sleep. I drifted off doing a mental inventory the fridge to plan dinner and realizing that I could pick my brother up from the airport. (We found out he was coming a day or two ago.)

At 7:30 a.m. Charlotte padded into the room and said, “Mommy, what happened?”  I asked her to crawl into bed with me (Philippe had left for work) and I told her. Her immediate reaction was to whimper and crumble. Poor sweetie, such a big change of plans. Once I got her attention, I told her that we could have a real vacation day with no worries or concerns or pain. AND, she got to have a real visit with her uncle. And, by the way, was she ready for breakfast.

I also told her that in 2007 we had taken her to the hospital, waited for several hours (without breakfast or lunch) and then got sent home . That surgery went swimmingly, I told her. So this delay seemed right to me.

We had a great visit with my brother, who now really needs to learn to play Blokus. Everyone is asleep now and getting rested to try again tomorrow.

Our hearts go out to the family whose emergency delayed Charlotte’s repair. We don’t know know who they are, but we know we have something in common.

Side note:

Because this is Heart Defect Awareness Week, Saving tiny Hearts Society will have an ‘About Us’ table along with our ‘Make A Valentine For Kids in the Hospital’ Station at Lurie Children’s tomorrow in the cafeteria around 10:30/11. Dr. Wax plans to come and do magic tricks. This event is a great way to meet families, see doctors and nurses and should end in the early afternoon.


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Exercise Test

Dr. Young asked us to take Charlotte to Lurie Children’s for an exercise test prior to surgery. Since one of Charlotte’s reported symptoms has been “heart pain” when her heart rate accelerates, Dr. Young wanted to get a baseline understanding of how exertion is effecting her heart and lung function.  FullSizeRender

The test took about an hour. First, Charlotte had to breathe into a tube that didn’t look like any other breathing test I’ve seen. Once she mastered the skill, she had to blow the bowling ball to knock down the pins–yep, the device was hooked to a computer and she used her breath to operate a computer game.

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As happens with an adult “stress” test, the technician then hooked Charlotte up to the EKG machine.  Charlotte walked on a treadmill up an incline that increased in pitch and speed every three minutes. The goal was to get her to achieve maximum exertion, stopping when she could go no further.  She almost made it there–after about 7 1/2 minutes, the tube (into which she was still breathing while she walked/ran) had caused dry mouth that she just couldn’t handle, so she called “uncle” a wee bit early.

Breathing tube hooked up to computer, attached to a headpiece so she could hold onto the treadmill with her hands. And, yes, that's a nose clip to be sure she breathes through her mouth.

Breathing tube hooked up to computer, attached to a headpiece so she could hold onto the treadmill with her hands. And, yes, that’s a nose clip to be sure she breathes through her mouth.

The cardiologist–in the room reading the EKG while she did the test–said that preliminary results indicated a 71% lung function; most kids her age should have 80%. Best, news–no arrhythmia while she worked out, no reason for immediate concern (or emergency intervention), and NO PAIN while she ran.