Sunday Icky Sunday

Sunday’s are the day reserved for errands and catch-up at the Vamp-lair. VM took the day off to be creative and recharge, so after some time at the gym this morning I took Vampboy around town to shop for food and other such delights.

He was a bit whiny for most of it, but when we returned home he seemed to perk up and turn into his playful self. He was particularly smitten with the family of Morning Doves that has nested in a potted plant outside on our bedroom deck. Tonight, the parent birds flew away long enough for us to spy two babies sitting quietly in the nest. Since we could see them from the bed, we climbed up into bed as a family, watched the momma bird (or was it daddy?) return, and sang Vampboy’s greatest hit, “3 little monkeys”.

Then, as Vampmommy was sitting up to take VB into her arms, I saw it lying innocently on the bed:

Vampboy’s MICKEY Button.

There was a brief moment of surprise and panic – after all, while we knew this little device was replaced every so often, this seemed a little too soon and too sudden. Since it’s supposed to be like changing an earring, replacement seemed simple enough. But, since we had never done it before, we took VB to our local ER to get a tutorial….

…A tutorial from HELL, that is. You see, much like an earring hole, the opening the MICKEY fits in will close up if left open for awhile. In most cases (at least by what we’re told), it’s 6 hours before you’d have a problem getting a new button in. Of course, we’re not most people – and karma obviously isn’t finished screwing with our heads. The simple demonstration turned into an hour and a half of screaming , as the doctor tried in vain to get a new button in. He never succeeded, so after consulting with our usual team of medical misfits, as I type Vampmommy is making a midnight ride to Chez Healing.

It looks as though Vampboy’s stoma (that’s the not-so-fancy term for the hole the button went in ) started to close up almost immediately. To fix it, they’ll most likely have to put a PEG back in (that is the tube he used to have before, that we had to tape to his stomach to keep from dragging on the ground), and then assess when and if a button makes sense. This is all complicated by the fact that he is most likely in need of a platelet transfusion at this point, and is also reaching the place in his chemo cycle where he’s an increased risk of infection.
So, I’m waiting for laundry to finish so I can pack up a bag of clothes and such to be brought down to Chez Healing tomorrow. More news as it develops.

And here I was thinking that I didn’t have much to write about this past week. The last few hours certainly made up for that!


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Father...Sage...Artist...The Weird One...I am many things to many people. View all posts by vampdaddy

8 responses to “Sunday Icky Sunday

  • Fez

    Oy vey! It’s fitting that “mickey” rhymes with “icky.” I hope the reinstallation goes swiftly, smoothly and painlessly.



  • Anonymous

    Yikes! Best wishes for yesterday to have been the low point and things start looking up again.

  • Eliza

    OMG! One of mine has a mic-key (as I think I mentioned before) and we’ve never had one fall out (knock wood) in more than a year of use. What a nightmare! Six hours my foot; you usually have a five-to-ten minute window where it can be done by a layperson and after that you’ll need an M.D. and possibly a trip to the endoscopy suite (usually). It’s much better that this happened AFTER you’d had the button for a while, because it’s when the stoma is brand-new that there is the most risk associated with the tube coming out (my kid’s GI explained that it’s like when a bunch of looseleaf pages come out of a binder and you can’t get the holes to line up, the way the layers of faschia, skin, etc. are held by the tube). It’s unforgivable that they didn’t show you how to change the thing right when they pulled the original PEG–I didn’t want to, but our GI made me come into the suite with her and watch her demonstrate. I’m the only one who has ever changed the button besides her, and ours don’t last as long as they claim they will, either! E-mail me if you or VM has any questions about enteral feeding, buttons, etc. that you’d like a layperson’s POV on (I’ve found that other parents are usually the best source of information on at-home kitchen-table pediatrics) and I’ll be happy to help in any way I can. My fingers are crossed for an infection-free recovery from this unfortunate little mishap.

  • Eliza

    Oh, one more thing and then I’ll shut it, honest–
    If VB’s button ever comes out at a time or place where you don’t have a replacement handy, I was told by my GI’s NP that the best thing to do is shove the old one BACK in and either have someone hold it while you drive to the ER or, if you’re alone with him, dry the skin around the stoma and place strips of medical tape over top of the button in an asterisk-shape to hold it in place while you go for help. That is assuming that the balloon deflated (I have heard of kids yanking them out with the balloon intact but it would hurt like hell and take an incredible amount of force)–if it didn’t then obviously you should deflate it first. This is okay to do because the gut isn’t sterile; saving the stoma is key.

    Also, if you ever replace the button and upon drawing back to check placement are not sure if it’s correctly situated in the stomach (that happens if their stomach is completely empty when the thing comes out), the easy way to check is to force the child to swallow a dose of liquid Tylenol (the bright-red or purple kind); then you can see if that comes into the tube that it is safe to inflate the balloon and call it a done deal.

    I hope we both get to forget these new skills in the very near future.

  • Vampdaddy


    I can’t get to your profile to email you…You can access my email on my profile, so pop me a note! Since last night we’ve had the nurses correct the mis-information regarding the need to speed up the switch off to a new button. Things are still in process to get this resolved (I think endoscopy is happening today), but trust me that we won’t let this happen again!

  • Lainey-Paney

    Oh. I’m sorry, Vamps.
    That’s crummy.

    I’m soooo sorry about your Mickey button…

  • Uncle Wolf

    I thank you for another educational session of learning based upon real-life experience.

    Still praying for all of you.

    Uncle Wolf

  • Anonymous

    Wow, it’s actually letting me leave a comment here, instead of making me go do it on myspace. 😛
    How craptacular. I’m sorry. I know it’s so hard to focus on the good when the bad keeps smacking you in the face. But what a beautiful moment you shared, looking at the nest and baby birds.. and practicing for American Idol with 3 Little Monkeys. 🙂
    blessed be,
    heather a~*

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