Sunday, August 31, 2008

Our version of Penicillin?

Friday morning we had what now seems like a fortunate error (at the time, it was an 'oh, shit!' moment)

Ellie has been on an enteral (formula) pump for about 20 hours a day for the last six months, working her way up to getting about 40 cc's (about 1 1/3 ounces) of formula every hour. This is a big step for the girl that used to tolerate only 1-2 cc's an hour. Each night we have taken her off the pump from 4 to 8 to give her a break from the backpack, give us some time with a 'free' girl, and also try and build her appetite for dinner each night. It worked well and the trickle of food was good for her bowel.

At our clinic appointment on Thursday the doctors suggested a slow transition to more time off the pump and more solid foods to complement her formula total but suggested that we stop increasing her pumped formula because tube feeds isn't the end goal for her.


In the confusion of a clinic visit on Thursday we forgot to plug Ellie's pump in and at breakfast on Friday the battery died. This forced us to give her Elecare by mouth for a few hours that morning while the pump charged. At noon when it was time hook her back up to the pump, we noticed a very interesting thing: her ostomy was behaving very well for us and she had a great appetite for lunch, which is usually a hit or miss meal. Since we were on pace to get a respectable daily total of formula into her for the day, we made the decision to stick with this approach for the day and see where it went. In the past big amounts of formula have flushed through her so fast that they weren't worth anything, but this time around, for some reason they seemed to be working.

The end results were great. She took all of her formula for the day, had a good ostomy numbers for the day and ate four good meals (we have added a 4th meal between lunch and dinner).we hooked up her enteral pump at 8 with her TPN for the overnight infusion and we had a breakthrough on our hands- a orally feeding girl who only had the pump at night!

I guess good things happen by accident sometimes.

Since Friday went so well we gave it a shot on Saturday as we went to zoo in Boston. We simply gave her cups of formula every few hours instead of letting the pump work.

Ellie loves sippy cups and likes them even more with straws. She gulped her stinky Elecare and we were in business.



This change was more dramatic for Abby and I than Ellie. It is a strange thing that is hard to describe but something that we both noticed during our trip- we suddenly had a kid who looked 'typical'-without tubes. We have gone from having a kid that used to get comments like, 'Oh my. That child is so sick that she needs tubes!' (no kidding) and now we don't have anything more than a lump for her ostomy.


It was/is sort of like losing your Sick Kid Club membership. With Ellie wearing abackpack with the scary white tube it automatically made Ellie one of the 'sickest' kids in the place which made is sorts of kindred spirits with any parent that had kids that were 'atypical'. All of a sudden we had a bubbly little girl running through the zoo. For the first time in a long time, at first glance, she had absolutely nothing in common with other kids with medical issues.

At one point, we emptied an ostomy out in the open (as we did in the Boston Public Garden this summer) because there wasn't a bathroom nearby as we normally do. Abby and I agreed that a little part of us wanted to get our membership back.

We kept going with this approach through the day today to see if we were seeing a new trend or a fluke but things are still moving in the right direction. Some things have popped up that we have noticed but overall it is a great change.

For example, Ellie gets truly hungry for the first time in her life now and we can see her energy level decrease when she needs formula and increase with a fresh dose of Elecare. we have also noticed an increase in her appetite through the day which is great since solid food seems to do great things for her bowel and poops.

And a two hump camel makes a two-hump poop....

Her dinner was so good tonight that we all shared a Popsicle:

So much for the dislike of sweet things. I guess this is what it is like to have a typical two year old, huh?

So onward we go with the experiment. We know that this may be a passing thing and it could all go away tomorrow but for now this progress is great.

I'll have to forget things more often. Just nothing to do with her TPN or Central Line. Those are still terrifying enough to keep us vigilant and on script. No ad libbing with sterile techniques.....

7 comments:

Anonymous said...

Wow- I don't know what else to say! That's great! Go Ellie! No backpack- she must be pretty excited! :) I hope it lasts for awhile! CAN't believe she drinks the Elecare though- yuuuuuck! Oh well, a good thing is a good thing, right? :)

Jessica :)

www.caringbridge.org/visit/eithenerosehilliard

MommyNay said...

So totally AWESOME!
Would you mind sharing what sorts of solid foods Ellie eats(maybe a typical run down for one day)? You mentioned solid foods do good things for her poops...would you elaborate? The idea of being on only tubes at night is like a dream...granted we do bolus feeds so Mari doesnt have that back pack, she is on TPN 18hours per day we give her her free time from 9am-3pm so thats nice for her. Im hoping at our next clinic appointment(wednesday) that we can decrease TPN to 16hours, I get literal butterflies at the idea! We are at 16ounce per day of a 22cal formula(we are on a break from solid foods)---this from a girl who used to only tollerate no more than 5mls per hour. Arent these girls just amazing?! :)

mini and brother said...

Awesome news! Wish she could teach a class on how to drink Elecare!!

K8 from CT said...

Excellent discovery! Here's to good news! I especially loved this: "We know that this may be a passing thing and it could all go away tomorrow but for now this progress is great." Good advice for anybody. Hooray!!

Sharron April said...

Go Ellie! Isn't amazing how equipment failure ends up being a blessing!

Anonymous said...

What great progress!! Peter likes his Elecare by mouth too - only if it is cold though. I am glad for all of you on how well things are going!

Kathryn Michalski

PsychMamma said...

Yay Ellie! How fantastic! We're still waiting on J to get motivated to take formula or food by mouth. She still only does water.

The freedom for all of you has to be wonderful!

Was this the first time that Ellie really ate sweets?? I ask b/c J HATES anything sweet and immediately spits it out. We wonder if the sugar content of her formula is part of why she doesn't want to take it by mouth.

Hope that things continue to go so well for you! Thanks for sharing.