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.

Starting Tomorrow–It’s Time for the 2nd Repair

Elmo!! (Hey, is that a double chin I spy on Miss Charlotte?!)

The week we’ve been anticipating with dread since June 2005 (when we brought Charlotte home from the hospital) begins tomorrow.

At 9:00 a.m. we will take Charlotte to Children’s Memorial Hospital for her pre-op testing. We’ll meet with Julie, our Advanced Practice Nurse extraordinaire, who will walk us through the surgery (again), then Charlotte has blood tests and x-rays to provide basic information in advance of the surgery.

Elmo, meet Elmoooooooo!!

We’ll keep everyone posted via the blog. Please feel free to leave messages or send emails, but don’t be dismayed if we don’t respond personally to each of you right away. We thank you in advance for your good wishes (and for the cards, emails and care packages we’ve already received.) Your friendship and support got us through this once; we’re counting on it to give us strength again.