Wednesday, May 16, 2007

After last week's events we have had a very slow series of days with Ellie. Her repaired central line is holding up well and is just a little bit longer than the old one, which makes it a bit more difficult to handle but it is not unmanageable.

The biggest effect of last week's fun was a reminder to Abby and I that at any moment, the alarm could go off and we could be going to Children's in any one of a number of levels of bad connected to her 'plumbing'. IF a central line breaks and the clamp isn't holding, it is the same as an open vein. The reality is that we know parents who have found their kids with open central lines and lot of blood during the course of a normal day. Sobering thoughts, but it is the reality of having the line in place. That kind of thing is the big motivation to get Ellie eating and get rid of that time bomb.

It took last week's minor fiasco to remind us of this. After so many weeks of good days it is easy to foregt about what could be.

These horror stories are all what if's, however. Right now Ellie is doing amazingly well.

Her feeds are up to 25 ml per hour round the clock for a total every day of close to 600 ml. Seeing her pump at 600 as we reset the total at midnight is especially gratifying for us after all of those months when she was lucky to break 50 for the day.

Another good sign is that her ostomy output is decreasing which tells us that maybe she is processing a good bunch of the food or that a big proportion is finding its way through the connection into her colon. This is the way that her ostomy was designed- as her small bowel comes down in size more food will go down than out.

For the last few days she has started to poop regularly for us. Combine that with round the clock urine and it seems that more food is going into her colon. We like that. Her poor sore bum doesn't but we are working on that.

Today I had Ellie here for the afternoon while Abby did some errands. It was great fun to play with her when she so happy.

Getting her to take a nap was a challenge but I finally managed just in time for my lunch to end and I got on my conference call with 30 seconds to spare, eating as I listened to the folks in DC talk about fish.

The videos are about 45 minutes apart as she moved towards a nap. I guess the video camera and dad laughing are not the best ingredients to get her to sleep. I couldn't help myself.


kate said...

Oh, Gibby, it's so right that you have a child who gets such joy out of that particular noise.

jackbrogan said...

Now listen. This child sounds like a steam engine. I can only guess that her grandmother taught her that sound. When you combine the sound with the great dance routine, we're talking talent.

Tell her that Jack said, "Ellie, we got some dancin' ta do."

She's beautiful.

mini and brother said...

She's beautiful!
For the bum, have you ever tried Cholestyramine in Aquafor 10% ointment? It's a perscription and it really works for us.
Just a suggestion.

Anonymous said...

I used to sit at the top of the stairs and wait for you kids to go to sleep. I am delighted that" what goes around, comes around" and you get to wait for raspberry blowing Ellie to go to sleep!

Anonymous said...

Hi -- you don't know me but I stumbled across your blog and I have to say that your daughter is beautiful and the love you have for her is so clear in this blog. Thanks for sharing a little bit of your family's joys and sorrows, and may Ellie grow up strong and smart.

Anonymous said...

Hi! Its Eithene's mom :) I just read what you posted about Ellie's colostomy fiascos, and I'm glad to hear we aren't alone! ;) We actually just began talking with Sandy Quigley this week- and I got her samples of bigger colostomy bags yesterday!(she said Eithene has outgrown hers as well, and that's why they come off all the time) You are right- she is the best!!!! Eithene also gets terrible yeast infections on her stomach- around her ostomies (she has an end colostomy with 2 stomas) all the way up around her g-tube, and we are hoping Sandy can break the vicious cycle.
Good luck with the walk- my dad ran the B marathon for Children's last month- we raised $2500- it was great, even though Eithene got sick with a respiratory infection from the weather (we think?) and ended up spending a week at our favorite hotel, lol!
We are hoping to get down to Mystic Aquarium sometime this summer (its closer to us than Boston's) and I'll be thinking of you Abbey! I just love to read Ellie's blog- she is simply the cutest thing ever- and Eithene just loves to watch her movies!!!
Jessica Hilliard :)

Anonymous said...

Hi Guys,
Naomi had the worst nappy rash the hospital had ever seen but one of the nurses from St. Lucia suggested gauze soaked in olive oil (extra virgin!!) for cleaning and the doc presribed a 50/50 mix of Nystatin and Metanium and I have to say they both definitely worked and she rarely had any red bum after we used them
cheers, Tunny

Anonymous said...

ILEX Paste works really well, just make sure to put vaseline on afterwards or it will make the diaper stick to the buttom. No prescription necessary. It's a little pricey, best to by online in bulk. But after taking care of a lot of short-gut kids, we've had the best luck with it.