Monday, March 16, 2009

In love, but not with the plug.

We had a visit today from our nutritionist through NutriThrive and I am in love. I got more out of her hour long visit then I have gotten at the past 5 clinic visits. Mainly because we were in our own home and I had all the time I needed to remember the 3 Billion questions that are bouncing around in my head all day. She reviewed all of the foods we currently feed Ellie (including going over the ingredients on the label of everything) , did the same with all her vitamins and fish oil, gave suggestions for new foods and then showed me when looking at the ingredient list on foods what bad things to look out for.

News to me, when it comes to short gut:
  1. Onions= BAD. Big producers of gas and hard to digest. Not a huge problem now but our goal is to reconnect and it will be a problem then. (Green Peppers fit this bill as well)
  2. Difference between soluble fiber(good) and insoluble fiber(Bad). ie, the fact that Ellie likes to peel her beans before she eats them is a very good thing.
  3. Beans are a big source of pectin, I thought it was all in apples. (pectin is very good for slowing small bowel transit time and apples are not Ellie's friend)
  4. Onions produce more gas than beans.
The list goes on and on, but that is all I will force to you read. It was great and when we were done I wanted to give her a big hug and a kiss. The only bad thing was that Gib missed it. I know he also has questions bouncing around in his head and would have loved some answers too.

He is in VA this week for work so I am flying solo, with my wing man Karlene of course.

Below is Ellie singing Bushel and a Peck before bed. She usually sings this with her dad, a when I told her we were making a video for Daddy, this is what she wanted to do.
video

Ellie is doing well but not doing great with the plugging of her ostomy. Gib and I have been talking it over and I finally called Dr. Jennings today. He agrees with us that the plugging doesn't seem to be working, and that this doesn't look great for full reconnection of her intestines. He also agrees with us that there may be something mechanical that is not allowing all the food to go down her colon. This could be kinks or sharp bends in the colon right below the connection with small bowel.

So this means we start talking about the next step. Right now that step is meeting in person with Dr. Jennings and deciding how we can fix this. And most probably that fix will mean another surgery, I think that would make the grand total around 6, excluding CVL placements. I know, YUCK. This one would not be a full reconnection of her bowels, since she is giving signs (vomiting) that she cannot tolerate being fully reconnected. What we all want to avoid is the possibility of taking down the ostomy just to bring it back up in 6 months. So we will find a happy medium between Jejunostomy (where we are now) and fully reconnected.

Other than all that things are good. Our lives are about to be turned upside down for good reasons in a week. We are renovating our house. Gib and I started some of the demo this weekend and found evidence of past tenants that had been living under our kitchen floor(bigger than mice, we're thinking chipmunk). Luckily they were long gone, but it was still very, very gross. We are excited to start, and know that in about a week we will be ready for it to be over.

On other fronts, I know there are a ton of new short gut families that are out there and I would love to list them on our blog. If you are a reader, have a blog and would like us to list it please email me. (see link on the top of the column to the right)

Well that is about it for updates for now. I leave you with Ellie's message to her father.



video

5 comments:

Gib and Abby Brogan said...

Totally unfair. Payback is a......

Love, Daddy.

Kate said...

I like the "doodle-oodle-oodle"s.

Stephany said...

Love it Abby! My mom and I would sing that song together when I was little too! So fun to hear Ellie sing it!

K8 from CT said...

This is wonderful, thank you. I'm having a really low day and this totally cheered me up. Thanks for sharing your Ellie with us all.

XT said...

She's lovely!

My elder son is a short gut boy. He is now 2 years old. We cut off his TPN 3 weeks ago, with no infusion ever since and he is doing very well. The trick is that we put him on Traditional Chinese Medicine. He has been on it for 5 months. Since then we have thrown away those (useless) antibiotics and his stools have been good.

Without knowing much about Ellie's specific problems, I would suggest trying a thousand-year old Chinese recipe for GI system. It is called "The Four Gentlemen":
党参12g
白术12g
茯苓12g
甘草6g

If she has loose stools, add
赤石脂18g
禹余粮18g

All these can be found in a Chinese herbal medicine store for low prices (shouldn't be over $5 I guess).

Here's how to make the medicine tea:
1) Use a non-reactive pot, soak herbs for 30 minutes;
2) bring the mixture to boil, for 15 minutes, filter out the liquid;
3) add water into the boild herbs,boil for 30 minutes and gather the liquid
4) Mix up the liquid gathered in two boils. Ideally about 1/2-2/3cup in total.

This is one day worth of medicine. You may split into two or more serves. Every time you need to warm it up (microwave is OK) and serve. NEVER serve it cold.

Suggestion: Use distilled water or reverse osmosis water. Do not use hard water such as spring waters.