Charlotte's Journey Home

Just a Regular Kid, Sort Of


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A Mended Heart is a Lovely Heart

We never sent a holiday card in 2014. My plan had been to send an e-card yesterday with one of the amazing photos by Lisa Gottschalk that we had taken in October. I did not get to that, either. So, belatedly I give you this repost.

Charlotte's Journey Home

Cropped Heart

For Valentine’s Day we give you our favorite heart.

Photo Credit: Dr. Jeffrey Gossett

Senior Producer: Dr. Luciana Young

Executive Producers: Ilene Goldman and Philippe Geyskens

And, owner of this heart (also super model): 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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Update 2 Day Post-Repair (#CHDAware)

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Current status: Charlotte has been asleep for the past 2.2 hours. As far as I know, this is the most continuous sleep she has had since her surgery. I can say that for the first time since Wednesday, she appears to be sleeping comfortably. She woke briefly, gave me a wan smile (her first really real smile) and said she was going to keep sleeping. My fingers are crossed that we’re turning a corner.

Medical update: Yesterday one peripheral IV (PIV) and the arterial line were removed. We would have removed the second PIV, but Charlotte screamed bloody murder, as my mother would say, and what should have been a 5 -minute process took more than 30. We decided to stop torturing the scared, angry darling (and, frankly, the nurses).

She continues to complain of back pain. This could be caused by being on a metal operating table for 5 hours, having her ribs spread wide, and/or lying in bed. We’re hoping to get her off the Dilaudid today. That should improve her mood as that med is known for turning delightful people into crabs.

Chest tubes will come out tomorrow, most likely. We’re working with the CCU and pain teams on a plan to diminish her anxiety with medication to avoid another dramatic scene and prevent her from injuring herself.

Milestones: After the removal of the Foley catheter, we’ve gotten C out of bed three times to use the toilet. Today instead of the toilet chair next to her bed, we had her walk across the room to the bathroom. Then we had her sit in a chair to eat her breakfast and watch a movie. She brushed her teeth and I brushed her hair. And we exchanged the hospital gown for a snap-backed t-shirt. (Get this for ingenuity–they use the toddler/baby hospital gowns as t-shirts for the older kids.)

She wants to be in control and hates that she is not. And she hates being the center of attention of the “flock of docs” when they come by. She wants to go home. So…I’ve told her that she alone is in control of when she goes home. She has to walk, she has to be sit, she has to improve her lung function. We cannot do those things for her nor can the nurses. I’ve also told her that while we know she is scared and angry, she has to be polite to her caretakers. That is who she is and I would hate for her to add remorse to her emotions when she realizes how truly wicked the meds make her. So far, I’ve gotten her to walk about 20 steps (she practically raced back to her bed), and she’s gotten herself to say please and thank you. I think that’s huge.

Today’s goal is simple–get up and walk. Ultimately, Dr. Jate believes she may go home on Sunday if we can get her to walk and use her lungs.

No pictures–she doesn’t want me to take any right now.

Still on StayCation


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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.)

 

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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