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

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.

 

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)

mended heart

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

The Wait Begins (#CHDAware)

Update #2: Phil and I are now up in the family great room at the Regenstein cardiac care unit, waiting. My brother is keeping us company.

We arrived at the hospital at 6:20 and begin preparing. Dr. Backer came in and greeted us. And the nurse had to do the antibacterial wipes again. That caused quite a bit of drama, but once it was over the anesthesiologist came in and gave Charlotte a shot of Versed.

By the time they took her back she was relaxed and giggling, and as Hal said, fittingly talking to us as they rolled her away, asking the anesthesia team about the bar code don’t and telling me how she knew about it.

The surgery will take 5 to 7 hours. Please forgive us if we don’t respond individually to each email or text to be a long day.

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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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Time for a Major Tune Up

I’ll cut to the punch: Charlotte will need open heart surgery to replace her conduit.

I can hear all of you gasping as you read that.  We, however, did not gasp. I think we would have been more surprised to hear that she needed only angioplasty based two things: (1) Her last repair was just about 8 years ago and back then the anesthesiologist said he thought we’d have 8-10 years on the conduit they put in; and (2) We both remembered Dr. Gossett telling us that he didn’t think he could balloon a second time. So, this time it was a matter of where the blood flow restrictions are.

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ILENE-0255 photos by Lisa Gottschalk

The MRI showed restrictions at the proximal point and through the right pulmonary artery (RPA). Given that the current conduit is only 16mm, she has definitely outgrown it. While they replace the conduit, the surgeons may also do some repairs to the RPA, which they did also in 2007. A larger conduit may allow easier interventions in the case of complications down the road. Moreover, she’ll feel better.

We’re hoping to schedule the surgery for the week of February 9 so that part of the recovery period can happen during our February school break (woo hoo).  We anticipate 5 to 7 days in hospital and another 1 to 2 weeks at home, followed by restricted activity. Followed by some sort of lovely vacation in April.

Before then we’ll have an exercise test (tomorrow) as a baseline. We’ll follow up with a post-surgical exercise test. There will be other pre-op tests as well, I’m sure. Check back here regularly–the blog is about to get busy again.

It’s been a month since Charlotte has been on a horse, and while she’s not riding right now because she’d like to do the repair first, she’s eager to get back in the saddle. Literally.