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)

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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

Medical Update 1-day Post Repair (#CHDAware)

And now to answer your questions.

Our night: Last night was hard. Let me start by saying that one of the best parts of the new hospital building is the silence. There is no overhead paging. We cannot hear children in other rooms. We hear no street noise. All rooms are private. There is a day bed for a parent to sleep on. And the nurses told us that their first rule is “Never wake a sleeping baby.” And post-op kids, no matter how old, are all babies.

Nevertheless, Charlotte required intense monitoring last night. Every hour the nurse had to do a full round of checks–blood pressure, temperature, flush all her lines, strip the chest tubes, adjust meds, reset or check all the med pumps, etc. It takes about 10 minutes each time. They tried to do it without waking Charlotte, but stripping the chest tubes and drawing blood through her central line cause a kind of suction-feeling pressure that is uncomfortable, or down right painful. So she woke up and sometimes pressed her Dilaudid button.

Can she eat yet? On top of that, Charlotte was starving. She was literally begging to eat. But she vomited twice after a few ice chips and we had to go back to square one.  After she vomited two more times, her night nurse made a connection between the patient controlled analgesic (PCA; pain med with a patient-operated pump) and the vomiting–it is one of the known side effects of Dilaudid. Charlotte seemed to be vomiting within 2-5 minutes of pressing the button if she was sipping water/juice while the nurse did her checks. So, at about 3 a.m. we added Zofran, an anti-nausea medication.  Ice chips and water stayed down, at long last. And Charlotte and I both slept hard for an hour.

But she had to have a chest x-ray before the doctor would allow a liquid diet. And there are no x-ray techs available at 2 a.m. Why? Because in this amazing place, the x-ray comes to you!  So, the portable x-ray machine and its operator showed up at around 4 a.m. The x-rays immediately uploaded to the radiologist and we got clearance for a clear liquid diet.  The only problem? The kitchen wasn’t open and the cafeteria had no jello, and other than apple juice, only had red juices. Red juices are bad–if she vomits them it can look like blood. Charlotte was so over apple juice by that time.

At 7:25 we ordered “breakfast.” Then we had to wait 45 minutes for chicken broth, jello, and iced tea. Poor honey whimpered until it came–by then she hadn’t eaten in 36 hours. I’d like to say she gobbled it down. She determinedly and slowly fed herself, and was indignant when the doctors came in to do rounds. But, she ate the broth and half the jello and perked up for a while. She’s been cleared for solids, and is currently watching Rainbow Rocks and munching Sun Chips.

Medical update: Dr. Backer came by and after commenting on how pretty Charlotte’s hair looked (for real :-)) noted how pleased he was with her progress. Medically, he added a blood pressure medication temporarily to address high bp. She’ll also start an aspirin regimen today. That is designed, in “mommy translation” to keep the porcine valve clean. I’m going to get the real terminology, but had to cut the doc short because Charlotte needed the room cleared.

CCU docs came by and we learned that Charlotte’s arterial line will come out today. Her Foley catheter (pee line, as we call it) came out earlier this morning. So, if she feels like it, we should be able to get her for a short walk on the ward this afternoon.

State of mind: As I just texted a friend, Charlotte is feeling cranky and crappy. Her chest hurts. Her back hurts from lying in the same position for the past two days. She’s tired. She is hot and feels sick (she has a low grade fever, nothing to worry about). She doesn’t want visitors–even asked her favorite grown up to hold off coming today. But she was kind to our rabbi when she stopped by. She justs wants mom an dad here. That’s perfect, because we don’t want to be anywhere else. Still, she asks for what she needs, mostly nicely. She says thank you and she attempts a wan smile every now and then. Dr. Jate says she’s “appropriate” and we couldn’t agree more.

Congenital Heart Defect Facts (Thanks to the Children’s Heart Foundation):

  • There are an estimated 2,000,000 CHD survivors in the United States.
  • For the first time, more than 50% of the CHD survivors are adults.
  • 91,000 life years are lost each year in this country due to congenital heart defects.
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
  • The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
  • In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

When you support CHD research and Lurie Children’s, you support Charlotte. And we thank you!

(If you want, you can note on the donation form that your gift is in honor of Charlotte and you want it to go to the cardiac team.)

 

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.

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!

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.

Pre-Op

The lead up to the pre-op appointment started in the most wonderful way. Charlotte’s classmates threw her a surprise party. While she was, I think, most thrilled with the gifts (especially an Equestria and Monster High Dolls), we were touched by the fact that the party was the idea of two of Charlotte’s classmates and the joy of the rest of them. The children put their hearts and souls into letting Charlotte know that they would miss her, that they will be thinking about her, and that she has an incredible network of support.

We spent the weekend playing with friends and generally not thinking about what was on deck for this week.

We also began a mindfulness practice late last week to practice breathing through fears, especially fears of needles.

This morning my friend Jeanne came to work with Charlotte, using an energy technique called EFT Tapping. Charlotte did as good a job as she could working with Jeanne, though she did lose focus once she realized that there were still crepes in the refrigerator. She did seem relaxed and ready for anything when we left the house.

Now, Jeanne and I realized that one tapping session and a few meditation sessions might not help her enough. But, Charlotte was willing and it was worth a try.

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I got a smile from her when I told her that Bubba was looking down from atop her head and smiling. I had to take this photo to prove it!

I wish I could say it worked miraculously. Sadly, no. Charlotte began to fall apart when it was time to change in to a hospital gown for the lung x-ray. The little tigers seemed babyish to her. Then the x-ray technician called her “sweetie” and told her she couldn’t hold Bubba during the x-ray. Charlotte’s dark side started seeping out. She was muttering, crying, on the verge of a meltdown. I snuck Bubba under her thumb and we got out of there as unscathed as possible.

She calmed down and seemed to set her mind to getting through the blood draw. Until we entered the room. I’ll spare you the details, you can get the general idea from the last time we did this. Truthfully, I’m sparing me the details. I don’t have the heart to write about this again. Bottom line–this time was a bit worse. We were better prepared; instead of a phlebotomist, we had a member of the IV team to do the draw. We called Child Life to distract. And still, Charlotte just couldn’t concentrate on hertools.We tried breathing. She didn’t want to tap, so I tried another technique Jeanne taught me, squeezing Charlotte’s finger tips while quietly talking to her. Eventually she said, “Mom, stop squeezing my fingers.” Sigh.

Eventually (maybe 40 minutes later?) the IV team member had to go to the ICU so she called cardiology and we went down to see the APN (advanced practice nurse) for our pre-op conversation. The nurse and Dr. Backer spoke while we went down and they decidedFullSizeRender-4that they could get the blood once Charlotte is under anesthesia tomorrow. It’s not ideal–it will add time to the procedure and the time that Charlotte is under anesthesia, but since they couldn’t sedate her today, it was the best we could do.

Maria, the APN, explained the procedure and risks and we asked a few questions. Then it was time to get lunch and head to Art for the Heart.

We got Charlotte to bed around 9:30 after a bath, watching Mirror Mirror and swabbing her whole body with special antibacterial wipes.

We are expected at the hospital at 6 a.m. tomorrow. We’ll keep you posted periodically. If we don’t answer your texts or phone calls quickly, please don’t take it personally.