Sunday, May 06, 2007

The day Gib put Gus on Elecare

We had another fun filled weekend with Gut Girl with only minor technical difficulties.

This morning Ellie and I went with Abby to watch Abby play soccer in the women's league. We left Abby at the game 30 minutes before it started and Ellie and I went to coffee and donuts before the game started. There is just something about going to Dunkin' Donuts with your baby on a Sunday morning that made me feel really good. Maybe it was Ellie snuggling in to be shy from the woman behind me or maybe it was the fact that I was finally there with all of the other families getting crappy breakfast.

Whatever it was it was very nice. It was even better to wheel Gut Girl and the wonder dog across the field to watch the games that I watched with just Gus last summer. Letting Abby show Ellie off to the women on her team who had only heard about her problems over the last year was very cool, too.

Ellie's new feeding strategy is working well and today we added some very well blended Dad-made oatmeal to the mix of high fiber fruits and cereals. So far things have worked very well for her with ostomy outputs (liquid into the bag) decreasing and the amount of food that travels through her colon increasing. This gets us more traditional poops and the occasional 'ass-polsion' of poop down the leg and in the bed.

Just like regular parents.

Today's minor technicalities led us to our first ever change of a g-tube without a nurse to help. A g-tube is an ingenious little device. A $1400 ingenious device, but still ingenious. ah, Blue Cross....

It is a silicone tube with a donut shaped balloon built around it. The tube goes into the hole in Ellie's stomach and the balloon gets inflated with a syringe full of water to hold it in and seal it against the inside of her stomach.

Empty

Inflated (food goes through the tube in the middle of the balloon)

When it gets old after a month, the balloon doesn't hold water and the balloon won't seal, which lets stomach fluid come out the hole and run down her belly. Besides letting stomach touch her her tender skin, the fluid makes her ostomy bag fall off.

Today we replaced our third ostomy in three days and knew we had to replace the g-tube. This was nerve wracking for us because we hadn't done it without a nurse but it was surprisingly simple. Deflate the old one, pull it out , pop the new one in, hold it in place and re-inflate with clean water.

It worked just that easily. The old one, besides being gross and smelly from living in Gut Girl's belly, was leaky and wouldn't keep a seal. We hope the new one works better.

The other technicality came when I decided to make Elecare formula to fill Ellie's pump this afternoon. Just like very evening, I added the powder to the pop top canister to make 20 ounces of formula and shook it. In our living room as I watched the Red Sox.

Vigorously.

Blammo!

The top opened and the formula went everywhere. I mean everywhere. I went for distance and got it on the floor, the couch, the lamp, the wall, the table, the dog, the laundry and the ceiling. It looked like a very sticky Jackson Pollock in white. Fortunately, Labradors like sugary stuff and Gus helped me out by cleaning up most of the mess. We will see how well his GI tract likes elemental formula. He still has Elecare crusted on his fur.

I guess we can file this under regular dad stuff, but it was funny anyway. Even for Abby who hates sticky formula and was well within her rights to give me hell for being so stupid. She didn't and laughed harder than I did.

Lesson learned. Make formula in the kitchen.

4 comments:

Jera said...

My daughter is a short gut girl too and also is on elecare! So I know exactly how you feel. LOL! Her name is Jayla and she used to have an ostomy, but recently got re-connected, after having it for 3Years exactly to the day. Stay strong and best wishes to the entire family, especially Ellie!!!!

Jera said...

My daughter is a short gut girl too and also is on elecare! So I know exactly how you feel. LOL! Her name is Jayla and she used to have an ostomy, but recently got re-connected, after having it for 3Years exactly to the day. Stay strong and best wishes to the entire family, especially Ellie!!!!

Anonymous said...

In your blog you say ah, Blue Cross.... Is this a good thing or bad? I am also with Blue Cross and am having nothing but trouble with them. My daughter has Eosinophilic Gostroenteritis. Ever heard of it? She is in desperate need of a feeding tube but BC/BS won't cover the elemental formula.
What is your experience.

ElecareMomma said...

Dear Annonymous: Ask BC/BS if they cover it under the DME (Durable Medical Equipment) portion of your insurance. Often times, they will not cover it as a prescription b/c Elecare is purchased from medical supply companies, such as Apria. We have been purchasing Elecare from them for over a year now for our daugher's digestive issues. Good luck! I appreciate how expensive it is.