Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Charlotte’s Story: The Road to a Healthy Heart

Sometimes I’m so proud of my kiddo, I could just burst. This is one of those moments. She was asked earlier this month if she would contribute a blog post to “Life Inside Lurie Children’s: The Official Blog of Ann & Robert H. Lurie Children’s Hospital.” Despite the month she knew she had planned, she said yes. And she said it without hesitation.  We talked a lot about what she’d write, but she didn’t start drafting it until February 14, just 3 days after her surgery. She dictated it to me.

So without further, ado, I invite you to follow the link below to read Charlotte’s Story: The Road to a Healthy Heart.


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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 4 Days Post Surgery (#CHDAware)

Current Status: After an hour of the card game Sleeping Queens and 20 minutes of reading The G-Man Super Journal, Charlotte finally deigned to take a nap this afternoon. It took her a while to get comfortable, but she seems to be sleeping. Phil stayed last night, so I can only conjecture, but I think she’d been awake more or less since 8 a.m. and she didn’t sleep too well after the 4 a.m. x-ray, so she’s pretty beat.

Medical Update: The chest tubes are still draining more and darker than the surgeons would like, so they will not come out before tomorrow. That pushes “go home” day until at least Tuesday. Needless to say, we’re all disappointed, none more so than Charlotte. But we don’t want the tubes to come out and then need to go back in. So, we wait.

Other than that, she’s looking good. She didn’t require oxygen last night. Phil talked the docs into changing one of her oral meds to something that she won’t cry about (we had a 3o minute drama last night over a medication’s taste and Charlotte’s refusal to take it). She took two good walks today and she can mostly get to and go the bathroom herself. She’s still in pain but is a bit of a stoic and won’t ask for more medication.

So, this is the boring part, the part that makes everyone a little short-tempered and less than their best self–the waiting. We have no control over the chest drainage and have no choice other than to wait it out.

 


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Medical Update 3 Days Post Repair (#CHDAware)

Current Status: Charlotte slept for the better part of 8 hours last night, only waking when the x-ray tech came at 4 a.m. Now, while I dislike the 4 a.m. x-ray, I love that it comes to here. So much less disruption than when we had to wheel her to the medical imaging suite. And she (and I) fell back to sleep easily. Since she didn’t move in her sleep, she woke up achey and super grumpy. Then breakfast took a long time to arrive. Then her visitor couldn’t come onto the floor before 10 a.m. The first few hours of Valentine’s Day were not good.

Now, however, Charlotte is watching a movie with her BFF Phoebe (who everyone thinks is an adult so she can come into the hospital. While in measure of years she is definitely over 18, in spirit she is a wonderful combination of 26 and 9. They are perfect together!)

Medical Update: Charlotte’s oxygen saturation plummeted during her sleep. Her magical night nurse managed to get the oxygen cannula into her nose without waking Charlotte up and easily remedied the situation.

Overnight, Charlotte’s right chest tube started draining more again, and darker. That means that the chest tubes can’t come out until tomorrow, which may mean that we’re not going home until Monday. Not our favorite news, but we understand. (Charlotte won’t, so we haven’t told her yet.)

She did get up and walk yesterday. In fact, last night she voluntarily sat up when Rabbi Conover came for Shabbat and then ate dinner sitting in the chair. She then walked to a window at the far end of the ward, about 100 yards. She was pooped afterwords, but we were so proud.

Dilaudid has been stopped and Charlotte is on one pain med regularly, another as needed, baby aspirin and Lasix.

Acquisitions UpdateI have to note that since arriving here, Charlotte has acquired 3 new blankets, 5 new stuffed animals, dolls, books, countless handmade valentines, game, activities, cookies,  and I don’t know what else. Different volunteer groups have created Valentine goodies for the children. One of the blankets came from Mended Little Hearts with a whole tote bag of goodies. I am humbled by the generosity of volunteers and families that give back in an effort to make children’s hospital stays more comfortable And I am grateful to our friends and family who are keeping Charlotte in their thoughts and prayers. Gifts are so NOT necessary, as you all know.

She naps. We soldier on.

 


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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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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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