Tuesday, March 06, 2007

A New Chapter

Get ready.. this is great, good and kinda scary new territory we are heading into.

Today we had an appointment with Ellie's surgeon, Dr Jennings. It was just a check up visit to see how she was doing and how our treatment plan was working. In order for us to have clear understanding of the state of affairs we needed to get a map of the new intestine layout with the ostomy and also get a better understanding of her current motility(ability to move food through the intestines). So early this afternoon before our appointment with Dr. Jennings we went to Radiology to get an Upper GI(UGI) study done.
A UGI study is done by placing Ellie under a fluoroscope machine and then injecting very thick white liquid barium into her stomach via her G-tube. Then we sit back and watch a live x-ray of her intestines to see #1 how fast the stomach moves the barium out into the intestines #2 how fast the intestines move the food through them (a measure of her motility) and on to the colon or out to the ostomy bag and #3 to see if her grossly dilated small bowel has gotten more or less dilated since creating the ostomy.

To give you an idea of how these things have gone in the past, we inject the barium into her stomach, and sit there looking at the x-ray of her belly at watch nothing happen. Because nothing happens we are sent away with instructions to return every half hour. Our return visit is usually better, the barium has moved into the intestines but, not very far and there is still a good portion of the barium in the stomach. This is usually when the radiologist looks at Ellie's small bowel and says, "Yup those are some grossly dilated bowels." We end up returning to radiology about 3-4 more times and the whole process would take 4-6 hours. Needless to say we never really looked forward UGIs because the news was always that things were the same or had gotten worse.

So back to today. They inject the barium and Gib and I watch.... her stomach move the barium out into the intestines. Then we watch the intestines start to move the barium through. We are shocked and very excited. The path looks good with no kinks or puddles. This is GREAT! Her stomach and intestines are acting the way they should, a huge change from previous studies. As we are cleaning Ellie up we look down and see barium coming out of her ostomy. The radiologist quickly puts Ellie back under the scope and we see that the intestines have moved the barium all the way through and you can even see some barium in her ostomy bag.
Now this may look like a large while blotch, but in reality the large white oval at the top right is her stomach, and all the hazy squiggles below and to the left are the 50 or so cm of small bowel that she has, on the lower right you can see her ostomy it looks like a light gray dough nut. The blotches of white all the way to the right is the barium in her ostomy bag.

So just as we are rapping up the study, I ask the radiologist how the bowels themselves look. She says "normal." Gib and I just kinda nod and accept that they are the same. Then it dawns on us.. Normal? I ask her to clarify does she mean normal for Ellie (ugly and dilated) or just NORMAL 11 month old bowels, short of course but other than that...NORMAL? "Oh, yeah they look like what you would expect a normal 11 month old intestines to look like." I think we asked her that same question using different wording about 10 times, we wanted to make sure we were hearing what we were hearing.

Ellie's small bowel is like it has never been before, undilated. She was born with dilated bowels that just got worse over time, and now.. normal. These bowels before her ostomy were in places over an inch in diameter. And now they are.. NORMAL. Sorry, I keep repeating the same word, normal, but it is a word that we didn't think, normal, we could hear in relation to Ellie's bowel for a very long time, if ever, normal. The fact that the diameter of her bowels is now normal would account for the increased motility.

We opted for the ostomy because her motility was so bad that food was pooling in her intestines and causing bacterial overgrowth and many other issues. That is no longer an issue, she now has very good motility. So, Ellie has done it, her bowels are working, the only problem is they are working a bit too well. The whole study took about 15 minutes. That is too fast for food to move through the intestines. Too much motility=New territory. This is the problem that most short gut children have, and now we are part of the club.

So we go to meet with Dr. Jennings and we are very excited and nervous because this is not what we thought we were going to be talking about today. He is very happy about the improvements in her bowels and quickly starts talking about what this means. It is too early to reconnect her bowels, there is to high of a risk that they will re-dilate. But what we will do is start getting her bowels ready to be reconnected and try to feed her in a way that she will be able to do the most with the food she is given.

About three times a day we will start putting a device into the ostomy to make it harder for food to go out of the ostomy. Because her colon is still attached this will force more of the food to go down her ostomy. This should slow the progress down a bit because the intestines have to push harder to get the food though the colon.

Along with this we are going to change our feeding approach. We will keep the total amount of milk that she takes in the same just spread it out more over the course of the day so the intestines have a better chance of absorbing the food. Ellie has been taking 4 ounce bottles in the morning and night, and while these are great we have now seen that they will only stay in her for about 20 minutes. So she actually got very little from them. We will still try to increase but maybe not as quickly.

This is going to be a work in progress as it always is with short gut kids. It maybe that we have to start Ellie on some anti-motility drugs if the above techniques don't work. But we will cross that bridge when we come to it. Gib and I are very excited to be heading into this new territory, and very nervous at the same time. We were really ready to hear more of the same today, and were thrown for a loop by what we did hear.

While our world was rocked today, Ellie was no worse for wear and was happy to be back home at the end of the day with her favorite toy, Gus.


G. April said...

I admit it, I outright said “YES!” when I got about half way through this one. And I was grinning for the rest of the read. WOOHOO!

The use of the word ‘normal’ is better than ‘average’ because that girl is not even close to ‘average.’ Just from reading the blog you can see that she is already reading on her own (Dec 14), backpacking (Feb 5) and she is even riding a horse! Well Gus anyway (March 6). I mean what’s next having boyfriend? (Feb 17) or job-shadowing her mother (March 1).

When she starts driving you better send her application into Harvard!

mini and brother said...

Congratulations! Great news being normal. Nice pictures too.

kate said...

I've read this entry six or so times over the course of the day, and it makes me feel good every time I read it. What great news! And your dog is a saint.

Sophie said...

Greatest news ever! So psyched!!!!

GoQuinnGo! said...

Wow, what amazing news! I sat down a few weeks ago and read your blog start-to-finish. Well now I'm hooked, and check it on a daily basis. Your daughter is so cute it hurts. All of those pictures with her tongue sticking out are priceless. I hope to oneday meet The Great Ellie!

Quinn's Aunt Kristin

Martha Brogan said...

A month ago when we visited Ellie she was saying Da-da for everything. Yesterday she looked right at Abby and said Ma-ma as she gave Abby a slobbery kiss! Nothing better!

Anonymous said...

wow, gus is seriously the Wonder Dog. and of course Ellie is the Wonder Girl. and then you two are the Wonder Parents. :-D i'm so glad i can get updated on my littlest cousin any time i want to (which is all the time). well, i miss you guys and hope i can see you sometime soon!!!!

Anonymous said...

Hi! It was nice to see you at CHB today- I thought I would come find your site, and I am so glad to read that you had this exciting appointment!!!!
Eithene and I will be heading home tomorrow, and little by little we hope to hear "normal" more often too! Maybe we'll cross paths again- Ellie is absolutely the cutest littel girl!!! I will try to keep updated on your page- what a great blog :)
Jessica Hilliard
(Eithene's site is www.caringbridge.org/visit/eithenerosehilliard)

Anonymous said...

Wow, what an awesome account of what you guys are going through! Brings back memories of our little fella who is now 4yrs old. He had Ileal Atresia and ended up with Necrotizing Enterocolitis which knocked off most of his small intestine - all at 3 weeks of age. He spent 8 months on TPN and 18 months Nasogastric tube fed. We had all of the barium dramas too, with Matt's gut re-routing a number of times - pretty nerve racking stuff. To cut a long story short, he is doing well, and is pretty normal now - proper height and weight etc...

Anonymous said...

Man - ran out of space!! Your little girl sounds amazing - that's one thing with these kid's with Short Bowel Syndrome - they're little battlers!!All the best with your little one - will check back in to see how things are going. Our thoughts are with you guys, as we know the road that you are on, all the way from Down Under here in New Zealand.
Kia Kaha (Which means stay strong!!)

Barbara Krause said...

I wonder how many times I've said "awesome" as I've read your blog. It's had many different meanings over time, but today is a beautiful, excited-for-you AWESOME! I believe the next step for Ellie will be riding Pansy. Well, maybe not.

Love to you all and to your and Ellie's caregivers.


Anonymous said...

Great News for you all and welcome to 'Normal' short gut territory - we've got some good tips for slowing down stools which you might need once Ellie is reconected - dealing with liquid poop without a bag well that's a whole new ballgame but I'm sure you'll be great at it!!
I loved the post about Freaking out the Normals too - that had me laughing out loud at the memories - and why is it only the little kids who have the sense to ask what the tube is for (usually as they are being dragged away by embarrassed parents!!)

Well done Ellie,

Tunny and Naomi