Medical Update 5 Days Post Surgery (#CHDAware)

Current status: Charlotte that her current status is “Awesome as usual.” Clearly, her ego has recovered ūüôā 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

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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On and Off the Heart Bypass Machine (#CHDAware)

Update #3: Charlotte was put on the heart bypass machine and the repair began around 11:20 (CT). The APN just left us with this update–angioplasty has been performed on the RPA (right pulmonary artery) to alleviate the constricted blood flow. The conduit has been replaced to address the stenosis there. Dr. Backer is now performing an echo to check the heart and valve function and then will ease her off the bypass machine and let her heart take over again. ¬†(Or he’ll take her off bypass and then do the echo). At this point, we think that they are leaving the valve–at last check it was competent so there was no need to replace it.

Next, Dr. Backer will “dry” the area and watch. And watch. And watch. Basically, he’ll watch for up to two hours to make sure there is no bleeding and, I think, that the valve truly¬†is ¬†competent now that it has blood flow at full volume and velocity.

So far, thank goodness, it’s been a textbook day, no complications and no arrhythmias.

We’re appreciating all of your texts, calls, emails and FB messages. Please continue to forgive us if we don’t respond super quickly.

It’s Congenital Heart Defect Awareness Week, so I’ll leave you with a few important CGD facts:

  • CHDs are the most common birth defects. CHDs occur in almost 1% of births
  • Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive.
  • Most causes of CHDs are unknown. Only 15-20% of all CHDs are related to known genetic conditions.
  • In 2009, the hospital cost for roughly 27,000 hospital stays for children treated primarily for CHDs in the U.S. was nearly $1.5 billion. In the same year, hospital cost for roughly 12,000 hospital stays of adults treated primarily for CHD was at least $280 million.

You can help. Support CHD research. By supporting CHD research and Lurie Children’s, you’re supporting Charlotte!

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.

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.

 

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.

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?!

 

Fear of Needles (or, We’re Still Parents-in-Training)

As promised, the story of the traumatic blood draw. I had to wait this long because it really was that traumatic.

As we were leaving the cardio check up, my phone rang. I didn’t answer even though it was a hospital number because I thought it was the Foundation (which supports the Children’s Service Board). (Not that I often ignore the development officers that help make our philanthropy a reality, but I was focused on Charlotte.) Phil’s phone then rang and he answered it. After a few “yes, I see” and “sure, we’re still here,” he hung up and announced that Charlotte needed a blood draw to be sure her kidney’s can tolerate the dye for the MRI. Since we were standing in front of the lab (literally), he told them we’d be right there. In fairness, if it had been either of us, we would have thought, “Well, I’m here. Let’s just get it over with.” What Phil forgot is that Charlotte is still a little kid and she doesn’t like sudden change of plans. And she really, really doesn’t like needles.

Looks like they were having so much fun.

Looks like they were having so much fun.

So, the blood draw didn’t start well. Charlotte thought she was getting a milkshake and going to school. Charlotte got a chocolate milk and a candy bar and a needle in her arm. She was hungry, hopped up on sugar, ¬†and surprised. And scared. And with no time to prepare. ¬†To be honest, however, we’re still not sure if having time to prepare for a needle helps her or makes her more anxious. ¬†(Ask me about flu shots one day.)

In any case, we waited about 10 minutes and then went to an exam room with the phlebotomist. There, Charlotte began to whimper, and then cry. She was hysterical just at the thought of the needle.

Phil sat in the big chair next to her and put his arm around her. The phlebotomist got all of her materials together, and Charlotte got more terrified as each thing was placed on the tray. Rubber band. Collection tube. Thin tube. Bandaid. Needle. Each item caused more hysteria and by the end, Charlotte erupted into screams and shivers and tears. I’m guessing anyone walking by the room worried she was being tortured.

Our technician reached for Charlotte’s arm to locate a vein. She showed Charlotte that she had nothing in her hands. Still, Charlotte yanked her arm away. And screamed. She said she wasn’t ready. We got her to let her arm be tapped, and then the technician rolled her chair to the other side of the room. She told Charlotte she’d stay there until Charlotte was ready. ¬†Every time Charlotte calmed down a little, she rolled a bit further. Each time, Charlotte erupted into fresh screams.

This went on for a good 30 minutes. The screams were ear-splitting. The terror in my daughter’s eyes tortured me. Phil didn’t know what to do–he’d never experienced this before. To keep it in perspective, neither had I. The last time she had blood drawn it was also a surprise. But Charlotte just sat on my lap, smiled and stuck out her arm. She was 7. ¬†The blood draw was part of a regular check up and not related to her heart. She wasn’t scared.

Eventually, she said she was ready. As she tried to rescind that pronouncement, Phil wrapped one arm around Charlotte and held her right arm firmly in his other hand. I held the left arm straight so she couldn’t move it. Then I used my head to block her view and further prevent Charlotte from yanking her arm away as the needle went in. I was rewarded by a primal scream directly in my ear as the needle went in.

A few moments later–longer than any of us wanted–it was all over. Charlotte had a bandaid (at least she doesn’t scream for those anymore!) and I had an apology for my ringing ear drum (she felt really bad about that). And Phil had an understanding of what vaccines and flu shots have been like for the past two years.

It’s gonna be a rough ride. Her heart hurts and she is so very, very scared.

Cardio Update

We finally have dates for the diagnostic tests. Charlotte will have her MRI on January 9, 2015 and the stress test on January 13. In the interim, we’ll visit Nennene in Leuven, Bamma in NJ, and friends in Paris. Dr. Young has said she can participate in all activities but should refrain from overexertion. So, nothing is emergent, but it is still pretty scary.

Charlotte is torn between not wanting to miss school for whatever procedure and not wanting to miss vacation for it. On the one hand, she’s self-conscious about missing school. She doesn’t want the attention and the sympathy. On the other, she doesn’t want to miss vacation. ¬†These are her concerns right now.

A little treat today–Charlotte as a star:

It’s #GivingTuesday. You know what to do. (Looks like a ticket page, but is donations only for now.)

Cardio Report

As I began last time the blog returned¬†from a holding pattern to our primary mode of communication about Sprout’s heart, I want to start by conveying our deepest gratitude for the emails and texts you sent after my last update. It is heartwarming (pun, though bad, is intended) to know that you continue to read and check in after nearly 10 years and that you especially tune in to the truly important things.

We had an early morning appointment at Lurie Children’s yesterday morning. As usual, Charlotte had an echocardiogram and an EKG. Liz Cappella, Dr. Young’s amazing nurse practitioner who has cared for Charlotte since our PICU days, came in to take a history. We let Charlotte take the lead answering the questions and describing what she’s been feeling. The bottom line for me is that Charlotte has been feeling things in her chest and her heart that she’s never felt before. While she was matter-of-fact in her explanations, it became clear last night that she was terrified (more on that later; probably in a separate post).

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Charlotte watches “Cloudy With a Chance of Meatballs 2” during the echo. The technician (whose face I have inexpertly hidden per her request) had to keep asking Charlotte to stop laughing. Laughing, apparently, works well for photographs. Not so much for images made from sound!

 

After reading the tests, Dr. Young came in to tell us what she saw: Charlotte’s echo and EKG did¬†indicate that the blood flow velocity through her pulmonary artery is limited and that there might be increasing stenosis. (There is more technical explanation to do with gradients and blood pressure; maybe we can get Dr. Young to post a comment and explain.)

We’ve been here before and we know the drill. This time Dr. Young is recommending more imaging prior to consulting with the cardio team, so we are waiting to schedule an MRI with contrast as well as an exercise test. Once those results are in hand, Dr. Young will conference Charlotte’s case with the whole cardio-thoracic team, including Charlotte’s surgeon, Dr. Backer; Dr. Jeffrey Gossett, the interventionist who performed the last angioplasty; doctors and nurse practitioners from cardio-thoracic surgery, cardiology, and cardiac critical care.

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Before they could get to the consultation, Charlotte and Dr. Young played Spelltower. Doc was quickly addicted and started batting Charlotte’s hand away from the screen. There’s a reason we love our cardiologist.

The bottom line, however, is clear: Charlotte will need an intervention. She will either have angioplasty or a full open-chest repair to replace the Dacron conduit, and probably the valve.

I’ll update more later with a compete download of the blood draw drama as well as Charlotte’s day of terror (from which she learned to put the iPad down and ask questions while mom and dad talk to the doctor).

I want to end on a personal note and congratulate Dr. Luciana Young on her promotion to full professor. If anyone has worked hard to earn that title, it is our friend and hero Luciana.