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.)

 

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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Recovery Day #3: Released from PICU & Wireless

Charlotte has officially been transferred from the PICU to the 5th floor cardiac recovery unit. She’s in room 586, bed 1. Her PICU nurse Naomi was sad to see her go. Charlotte was so peppy and playful–she provided a real ray of sunshine in the PICU.

She had her chest tubes removed this morning. I’m sure it was uncomfortable, but she was a real trooper. We’ve also had the peripheral IV removed from her foot and are hoping she’ll have the strength to walk tomorrow.

She’s eating gang busters, but reflux reared its ugly head again this afternoon.

On the fifth floor Charlotte gets to eat in a high chair. Actually, Mom thinks she prefers lolling around in bed with milk and cookies.

And she’s still running a low-grade fever that seems to have Mom & Dad more worried than anyone else.

Mobile and running for Mayor of the Cardiac Recovery Unit.

On the 5th floor she still has monitors attached to her chest, but she’s got a wireless monitor. We got to visit the Child-Life Center this afternoon for Charlotte to play with the train table and color at a table.