Friday, June 29, 2007

Oley

Well, we are back from the Oley conference. It was great. We knew three other families that were there from Children's hospital. The first day we spent the morning in a large group meeting talking about the future medical advances in the area of short gut and for people on TPN. Then in the afternoon Gib and I split up and he went to a talk about Central line care and TPN and I went to one about pre and probiotics. (prebiotics=food for your good bacteria that you already have in your gut. probiotics=adding more good bacteria to your gut)

Gib's sister Beth came along to help with Ellie. Good thing. This was our alternative
Then we both went to a meeting about pediatric issues. It was great, they talked about things we had not really thought of yet. Like, potty training a short gut kid, Tooth and bone development, and puberty. It was eye opening for us, but also good because there were so many parents there and their short gut kids looked great and were running around looking like normal kids. They were just a bit skinnier and had a few tubes.

The only thing we did notice is that most of the kids that were there had lost their intestines when they were a bit older, not many kids were there that had lost some of their intestines at birth. But then we realized, we (the Omegaven families) are the new group at Oley. Now more and more infants are surviving into childhood because of Omegaven. So many of the meetings were very helpful, but they were all really directed at adults and older children. So now Oley has to recognise this new group that will only get bigger and bigger.

The second day the morning was a large meeting with every one. The guest speakers were Dr. Puder (Mark) and Dr. Gura (Kathy). They were there to talk about Omegaven. I think the message got through. When you say that Children's Hospital Boston used to lose 6-7 kids a year to TPN induced liver damage and now they the lose NONE. That Toronto hospital used to have a near 90-95% mortality rate of children with TPN induced liver damage. Now they have 0%. It is hard to ignore.

After that meeting we all went out for a picnic with four other short gut families, Mark, Kathy, and Denise (the Uber nurse).
Sorry that Gib is blocking out Mark, but he is there. This is from the left Charles and dad, Maggie and mom, Luke and mom, Ellie and dad, Caleb and dad and Kathy and Mark.
This is Gib and Ellie with Dr. Kathy Gura(discovered Omegaven) and Dr. Mark Puder(started and is currently running the Omegaven project). These are the people that are responsible for our happy, healthy baby girl. The only person missing is Dr. Jennings. This is Ellie and Luke on the swings together. It was Ellie's first time on a swing.
Ellie and Maggie playing peek-a-boo.
This is Luke and his mom with Charlie's mom and Charlie playing with Gib. Charlie is the first little boy that was put on Omegaven. They were willing to try anything to save his life. It had only been tested on mice before Charlie, and now he is four years old and his liver is doing better than mine.

If you look back at all the pictures in this post, you will notice that most of these cute kids have back packs on. That is what the whole conference was like. Halfway through the first meeting I realized that many of the adults had little back packs or fanny packs on. Many of the people there were on TPN almost all day and some were on G-tube feeds almost all day.

We had a great time an learned a ton. The biggest take home message we got, is that we are incredibly lucky to be at Children's Hospital Boston. Next week we are making an appointment to talk to Dr. Jennings about a bone density scan, leaky g-tubes, and starting pre and probiotics. Ellie passed out after the picnic. We were in the middle of emptying her ostomy when she fell asleep. Like her shirt?

5 comments:

mini and brother said...

Sounds like a great conference. I love seeing pictures of healthy short gut kids and those wonderful doctors. We love probotics, it's the only thing we have found to keep Cdiff away. Ellie looks beautiful like always.

Our Family said...

I love the feet picture you added at the top of your blog! Such a sweet picture. Ellie is looking so big! It's amazing how fast our babies grow up.

Anonymous said...

Hi there,

We have never met but I follow your story and found you through the short gut wiki page. First of all let me say, Ellie is gorgeous, her smile and love of life is contagious. I loved that one video where she walks right past you and into the other room, squealing with delight. Second, your desire to learn more, to find effective treatments and solutions to the challenges you face with Ellie's medical condition is inspriational, to say the least. You guys are doing such a great job and are such wonderful advocates for omegaven. Keep up the great work. You done good!

PS love the "feet" photo too!

brenda p. said...

Thank you so much for all the information you continually provide about short gut kids. Nora Thomas is my grandniece and your blog helps us understand both what's happening in this area of medicine and what we can expect for Nora. Since we found your site and saw the difference Omegaven makes, our family has great hope for her future. I read the blogs of the other short gut kids on Nora's site regularly and keep the Jacksonville branch of Nora's family posted on the progress of them all. Ellie is a household name here! She is adorable, and I enjoy the glimpses you provide of her discovering the world. And, yes, the feet picture is great!

Anonymous said...

I just lurked in but wanted to share that our now-5yr old is a short gut. He lost about 50% of his small intestines and ileoceccal (sp?) valve at 1 month old due to a bowel obstruction. It was a long road of TPN, g-tube, the whole nine yards, but happy to report that he is now tube free and just like any other boy his age. :) He will probably always have loose stools, but hey, he made it. Just to see Ellie and her central line, gtube, etc and all those medical terms and supplies I remember so well reminds me of what a blessing we have. It is great to see stories of other kids who have experienced this... back in 2004, there was very little info. She's a beautiful little girl!

Here's a pic to our boy - you can't see all his scars, but they're there to remind us of his long battle and recovery!

http://www.facebook.com/#!/photo.php?pid=4251693&id=541831460