Thursday, August 20, 2009


Today was a big day. BIG. HUGE. Lily got her button out!

Tuesday night we got a call from the automated appointment system that Lily had an appointment on Thursday. It would be TOTALLY useful if they would include WHERE said appointment is, so Wednesday I called the appointment schedulers to see. It is with her endocrinologist. I have this overwhelming feeling I am forgetting something so I also call Florence at the Onc clinic to see if there are any orders or notes or anything in Lily's file that says I should be doing something. She laughs. I guess I am officially in the getting back to normal phase- which includes forgetting things. I have less to keep track of, so I forget to write things down. I think- sure 1 appointment, surely I can remember that. Apparently not.

So we mosey on into clinic-say hi to the fan club. Get vitals taken, visit some more. Dr. P jokes that we are having entirely too much fun at the hospital. I tell him- this IS fun comparatively. That earns me a hug. We go to see the endo doc. Everything looks ok. Lily hasn't grown at an astronomical rate. She hasn't gained weight, but she is more active and is eating fine. Lily and Bella are having a carpet picnic of Doritos and Juice boxes while we talk. Did I get the labs drawn? Aha! That is what I forgot. She is easy going- just get them done next time she's accessed. How's 10 minutes from now? Perfect. Yea.

Back to the other side of clinic. Lily was a champeroni. She laid for the accessing and just held my hands. Miss Angela- one of our fave nurses was fabulous. I was stressed that Lily wasn't bundled- but it was one of those situations where you raise the bar and they clear it and you wonder why the bar wasn't there all along. And then you remember the last time she kicked the bar clear off and we said- maybe next time. SO her doc pops in and checks her out- let's get the button out.

Um. Ick, ack, eek and uck. But doesn't that require stitches and she needs to be swim ready for Disney World? Apparently it requires taking the button out and a band-aid. My stomach is churning. I can deal with bodily fluids. I've cleaned them all up. Puke, poo, blood, pus- the gamut- but open access to the stomach and it's contents grosses me out. My knees already feel wobbly. Miss Flo calls a surgeon to double check, yep pull it out, put a band-aid on it. If it's still oozing in 2 months, we'll stitch it. 2 months! YGTBSM! Ick, Ack, Eek and Uck . Florence assures me that stomach contents should only leak for a couple days. No no no no no. That will not do. I am given special dressings for swimming. Swimming? But there's a hole in her stomach. No different than swallowing pool water. It doesn't increase her risk of infection- it's just that pools frown upon people swimming with open sores. Really? Ya think? Ick, Ack, eek and uck. Here's me frowning at my daughter having a open tunnel to her belly for days.

Lily is climbing up on the table and laying down. C'mon mom! It's pretty impossible to hold her hand and not watch. The tube comes out, as she breathes the little hole closes and opens. She laughs when she realizes it doesn't hurt- a piece of orange oozes out. Oh god. This is heinous. Ick, Ack, Eek and Uck. It's gonna be a long time before I'll be able to eat Doritos. Lily won't let Florence clean it- she wants me too. I DO NOT GET PAID ENOUGH. So I am relegated to cleaning off day old belly boogers mixed with Dorito digest all the while the damn hole keeps winking at me. I get it clean enough that Flo can slap a dressing on it and I can pretend that my daughter's stomach didn't just wink at me. When the nausea passes we will celebrate accordingly.

If you are interested in the procedure. Here's an at home demo of a little girl name sadie. It is way simpler than one would guess. And a lot more disgusting in person. But yea LILY!


  1. Ok, that's pretty gross! But, I was chuckling out loud! Ewww! I can't even handle tube feedings with some of my students I work with, but especially suctioning trachs--that's my limit! Glad she did well and it is really helpful for my Dorito intake as well...will never look at them in quite the same manner!

  2. Ok, you did it again--I nearly fell out of my chair laughing at the "winking" belly, and I totally think you need to trademark the term "belly boogers".

    Yey Lily! What a trooper! Yey Jen! There's NO WAY you're paid enough for the job you do. :)

  3. How fantastic! This is a good road to be on! Way to go, Lily! Love, Grandma Allen


  5. oh my,,,, you sure never signed up for this ehh? Dorito's,,I'm not sure if I can digest them myself in the future.

    Congrats on meeting another milestone--bye bye stomach micky,,,HELLO MICKEY MOUSE!!!!

    Hugs, hugs, hugs,

  6. Who would have thought oozing Dorito belly boogers would another stop on the way to normal?

    Remember what's next? You're going to Disney World!


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)