Charlotte's Journey Home

Just a Regular Kid, Sort Of

Medical Update 1-day Post Repair (#CHDAware)

6 Comments

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.)

 

Advertisements

Author: Culture Bean

I am a mother, a pre-published children's author, and a published academic. I am also a "mommy blogger," though I hate the term. My passions are reading and writing. As a professor, I strive to help my students think critically about the media and culture with which they engage. I've started this blog because it's time I put my money where my mouth is!

6 thoughts on “Medical Update 1-day Post Repair (#CHDAware)

  1. Ilene, thank you so very much for the vivid imagery, and meticulous attention to detail in that you write. It is really incredible to try to place oneself in your (and Charlotte’s) shoes and just hope and pray that all goes well. I am in admiration–you have such inner strength, and what luck that writing comes so naturally to you!! Much love from KC, Tamara and co.

  2. If it makes Charlotte feel any better, her “favorite grown up” was EXTREMELY disappointed not to be visiting her favorite person today!! How are you and Philippe holding up? Sending love.

    Deborah

    >

  3. Man, I hope she feels better every day. 😦 If they used a spreader to open her chest cavity, I’m sure that put pressure on her spine as well, which could contribute to the pain. Nothing feels better than walking around OUT of bed…Except when you get back in bed after walking and can sit!!! She may feel very very sad and not know why. I still have no idea why that happens after surgery, (some articles say pump head…?), but it’s a phenomenon that happens specifically, largely, to heart patients after open heart. So some emotions might be hers, some might be drugs, and some may be from her body having surgery. To give you an example, I sat in the hallway looking out the window and bawled. No idea why. For like, an hour. Also, that first shower was torture.

    Tell her I’m thinking about her!

  4. Dear Ilene and Phillipe,
    My thoughts and prayers are with you and sweet Charlotte. And yes, thank you Ilene for chronicling your experiences and Charlotte so poignantly. Even though we are far away, I feel like I am next to you. You are very talented at this, as you have proven over the years, but it is also your love of Charlotte that is the engine. I can’t wait to have you all back in NOLA again so we can meet up at Domenica’s and do happy hour again. I will most definitely buy Charlotte’s pizza 🙂 When it is appropriate and if she remembers me, tell her I send her my love. And to you, well, you know: you will always be near and dear. Keep us posted on her recovery. Besos mil,
    Ana

    • Of course she remembers you! She’s “known” you since before you ever met. We’re looking forward to planning a trip to NOLA, too. Mil gracias para tu amistad y tus palabras.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s