Charlotte's Journey Home

Just a Regular Kid, Sort Of


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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.)

 

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MICkey button saga

The overdue promised update on the two recent replacements of Charlotte’s MICkey button:

As the cardiac surgeons prepared for heart surgery they removed Charlotte’s MICkey button and replaced it with a Foley catheter. I’m not really sure why. It seems this is just what they always do. Logically, Charlotte only needed “egress” from her stoma for a day or two, and she definitely needed the gases to be able to flow freely out. Also, the Foley eliminates any concern about an extension tube coming out or the button itself getting yanked by accident.

In any case, as soon as Charlotte was able to take food by mouth, our PICU nurse replaced the Foley catheter with a brand-spanking new MICkey button. We get a new one every 3-5 months and we were due.

The new button seemed just like the others-it was a little loose, a little twirly in the stoma, and occasionally looked like it was really sticking out far from her tummy (they’re supposed to lie pretty flat on the belly).

A week after the surgery, Charlotte’s babysitter Jenna called me at work, worried that the button looked like it might fall out. She saw a lot of leakage between the button and Charlotte’s tummy. Since we hadn’t really experienced that before and Jenna know what the button usually looks like, I had her tape it down and I immediately made an appointment with the pediatric surgery clinic.

At clinic on Friday March 30, Teri, our surgery APN, measured the length into Charlotte’s tummy (pretty weird—she had a measuring-tape type thing that she stuck into the stoma. I did NOT watch) and decided that the button we had was too long. We (Teri and I) now think this may have been a problem for a long time given that we haven’t taken this measurement in a year. She put in a new button and we were on our way.

All this took, by the way, 10 minutes.

I got home and found that it was very difficult to put the extension tube in or take it out. We had to really push on the thing. The whole weekend was rough—Charlotte didn’t want us to touch the tube because we had to fight so hard to get it in or out. But, we did have to take it out for a bath a few times. We lived like this until Wednesday when I got quite fed up.

So, during our Cardiology check up, I discussed it with the Cardiology APN, Debbie. After a quick phone consult with Teri, we realized that the button itself was likely defective and we made an appointment to have it replaced.

Charlotte and I left Cardiology, went home for nap and lunch and returned to the hospital. Teri replaced the button and we were, again, on our way. But, yes, we did spend ALL day in the hospital on Wednesday.

The new button is perfect. Hopefully it will last for several months!