Charlotte's Journey Home

Just a Regular Kid, Sort Of


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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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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.

 


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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.


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Still Waiting

It has been brought to my attention by my dear sister that I was remiss on Friday because I did not update the blog after we got home from the hospital.  The quick skinny: The MRI went fine. We were home by 12:30 or so. I slept for more than 3 hours. Charlotte played on her iPad for the same time. Her throat hurt, but she had no adverse reactions to the anesthesia.

She did have a major reaction to the IV port that was still in her arm. While it was not a needle, she had the same meltdown about taking it out that she had about her blood draw in November. Without going into the traumatic details, I will say that she delayed her own departure from the hospital by about 45 minutes and I was exhausted afterward.

Now we wait…the doctors conference tomorrow and we’ll have news this week.


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The Waiting Game: Charlotte in MRI Lab

We woke Charlotte at 6 a.m. today for our 6:30 a.m. at Lurie Children’s. She was not thrilled to have to start her day without breakfast, but she loved leaving the house in her pajamas.

The wonderful anesthesiology resident, Dr. Jackie Morano, explained the sedation procedures to Charlotte and offered her a choice of flavored masks for the “laughing gas.” She began to explain the rest of the procedures and I could feel Charlotte tensing up. With her increasing fear of needles, Charlotte began to get hysterical at the notion that anything would still be in when she woke. Jackie’s phone pinged–Dr.Hubert Benson texted to say, “So you made her cry already?”  You see, he and I had had a lengthy consult yesterday about Charlotte’s fear of needles and from his position outside the room, he knew exactly what was going on, so he was teasing Dr. Morano.

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Never leave home without it…Charlotte and Bubba, and the iPod.

When Dr. Benson came in we further discussed needles (the IV for the contrast dye would placed AFTER Charlotte was asleep) and IV port (the “straw) from the IV will still be in her arm when she wakes up). We also talked about the flexible breathing tube and waking up with a scratchy throat.

Jackie showed Charlotte the flexible, tiny plastic “straw.” Charlotte relaxed immediately and even smiled. Jackie then explained to Charlotte how the doctors needed her to breathe and hold her breath “just so” in the MRI machine, and that it would be so much easier to let them do it for her, thus the anesthesia and the breathing tube.

Charlotte’s pre-op nurse showed Charlotte a video of an MRI machine complete with MRI images. While Charlotte won’t be aware of the machine and its noise, I think it was good for her to see it. She said, “I can see how that would make people afraid of small spaces.”

Given her needle anxiety, Dr. Benson recommended a “relaxing drink” before heading back to the MRI room. He even offered it “on the house” (winking to us that insurance would cover it). So, dopey from versed, Charlotte giggled her way back to the “Den,” the MRI lab.

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“Look, the Caution Sign looks like a Minion. Hee hee.” “What’s a Minion?” (Dr. Benson) General ribbing of the doctor by the nurse, Charlotte, his resident and us ensued!

 

That was at 8 a.m. Now we wait for the call that she is in recovery. Once she’s ready, we’ll go home to sleep it off.  We won’t have results or further information about the diagnosis and repair plans until Tuesday.

For the moment, our only real concern is that Dr. Benson had no idea what a Minion is.  How is that possible?!