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.

 

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.

 

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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Surgeon Looks Happy (#CHDAware)

Update #4: Dr. Backer stopped by about 30 minutes ago, coffee in hand, imprint from surgical cap still on his forehead, and grin on his face.

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Bubba sits on the gurney outside the surgical suite, keeping guard.

 

Bottom line: Charlotte is out of surgery and he is happy with the results. As he was talking, the surgical team was getting ready to bring Charlotte up to the CCU. We should be able to see her in an hour.

If you don’t need details, you can stop reading there!  If you want more, read on:

The doctor replaced her 16mm Dacron conduit and valve with a 22mm conduit and valve. That means that she has a valve the approximate size of mine. He said that the new valve (her last one was placed in 2007) are made better than the old ones. And it is big enough that there is a good chance that a valve replacement, if needed, might be done via catheter procedure. No one can say for sure that this is her last open heart surgery, but this one went as well as can be expected.

p.s. The new valve is still a “piggy valve,” so kiddo will still be able to snort when she laughs.

9:17 (#CHDAware)

Update #2: The APN just updated us. Anesthesia got Charlotte all settled in and Dr. Backer made the incision at 9:17 a.m. (CT). Now he’ll excise 8 years of scar tissue before he gets her on the heart-lung machine and begins the wait.

Stay tuned…

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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Ready, Set, Wait….

When our phone rings at 1:22 in the morning, we answer it. Largely because Philippe’s mom is not doing well.  This morning it was a call from the CCU (Cardiac Care Unit) telling us that Dr. Backer, Charlotte’s surgeon, had to postpone the surgery until tomorrow (Wednesday) because an emergency had come up.

I listened, took mental notes, and hung up. Philippe asked me three times if I was sure of what I heard and if I was sure that it really was the CCU. I thought, “Because a prank call at 1:22 in the morning would be so specific as to cancel your daughter’s heart surgery?!”  But, I pulled the number up on caller ID and dialed it. Maybe the night nurse thought I was nuts, I don’t know. She found the gentleman who called me and he confirmed that I had heard correctly.

We rolled over and went back to sleep. I drifted off doing a mental inventory the fridge to plan dinner and realizing that I could pick my brother up from the airport. (We found out he was coming a day or two ago.)

At 7:30 a.m. Charlotte padded into the room and said, “Mommy, what happened?”  I asked her to crawl into bed with me (Philippe had left for work) and I told her. Her immediate reaction was to whimper and crumble. Poor sweetie, such a big change of plans. Once I got her attention, I told her that we could have a real vacation day with no worries or concerns or pain. AND, she got to have a real visit with her uncle. And, by the way, was she ready for breakfast.

I also told her that in 2007 we had taken her to the hospital, waited for several hours (without breakfast or lunch) and then got sent home . That surgery went swimmingly, I told her. So this delay seemed right to me.

We had a great visit with my brother, who now really needs to learn to play Blokus. Everyone is asleep now and getting rested to try again tomorrow.

Our hearts go out to the family whose emergency delayed Charlotte’s repair. We don’t know know who they are, but we know we have something in common.

Side note:

Because this is Heart Defect Awareness Week, Saving tiny Hearts Society will have an ‘About Us’ table along with our ‘Make A Valentine For Kids in the Hospital’ Station at Lurie Children’s tomorrow in the cafeteria around 10:30/11. Dr. Wax plans to come and do magic tricks. This event is a great way to meet families, see doctors and nurses and should end in the early afternoon.

What Would You Be Doing 18 Hours Before Major Surgery?

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After her pre-op appointment (more on that later), Charlotte led us to the 900 N. Michigan building. She was determined to play piano for an audience at Art for the Heart, a shopping event benefitting Saving tiny Hearts Society. She was so touched and honored to have been asked to play, even the day before her surgery, that she simply couldn’t imagine not trying. At about 5:15, just as the vent was beginning and before it got into full swing, Charlotte hit a wall. She had to play and then she had to leave. So, Francie, the director of StHS, and her merry band of volunteers stopped what they were doing to listen to Charlotte play a Steinway.

Not bad for 12 hours before surgery, no music (umm, we left it at home), and a broken pinky, right?!

Her reward? A snuggly blanket for the hospital and heart-shaped cake pops.

Bravo, Charlotte. You’ve proved once again that a mended heart may be the strongest heart of all.

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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.