Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Feeding Clinic Update

This entry really should be titled “The Best Day Ever.” Why you ask?

Well, it has nothing to do with the 2 1/2 hour drive to Milwaukee or the nearly 3 1/2 hours it took us to get home.

Here are the basic stats of our visit.
Weight: 33.75 lbs (15.3 k)
Height: 40.5 inches (102.2 cms)
Yes, she is off the charts for height. In fact, she hits the charts at average for a child of 4 years and 3 months.

But, these stats are not the reason this was the best day ever. This is

“Bye bye, tummy tube.”

Yes, in that little specimen cup, Charlotte is holding her MICKey button, the last one she had in her tummy. Right now she sports a piece of gauze over the stoma. The stoma (or hole) should close up within 2 weeks.

We’ve also stopped the Pepcid as Charlotte’s reflux seems to be resolved. Further, we’ll be dropping one can of Pediasure a day, substituting it with whole milk, with the goal of getting her to whole milk with no additives by the time she starts preschool in September.

We’ll follow up with her surgeon in Chicago if the hole doesn’t close itself. After that we’ll go to Wisconsin in September to consult with Charlotte’s dietitian, Sara. (Every toddler should have their own dietitian!). In December, we’ll see the whole team.

As you might imagine (or not if you’re my brother!), I really have no words for the emotions I’m feeling right now. The champagne is in the fridge. It’s a good bottle, Veuve Cliquot, that Philippe’s EVP gave him at holiday time. We were saving it for a special occasion and we can’t think of anything more special than this.

The best day ever. Ever. Ever. Or, at least in the history of feeding Charlotte.

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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!