Tuesday, September 16, 2008

Looking Behind the Curtain

This past week I (Abby) got a chance to go to the Pediatric Intestinal Failure and Rehabilitation Symposium in Pittsburgh. It was a three day event, the first day is geared toward parents and caregivers, and professionals in the field. The second two days are geared toward professionals but, parents were welcome to attend.

The first day was nice with some good information and it was fun to see the parents that I had talked to on line but never met. Also good to get a chance to meet their kids that I had heard so much about. I arrived on the first day I ran into almost all of the staff from our short bowel clinic and a bunch of nurses and NPs from our floor at Boston Children's. The second day was very interesting in that almost every short bowel GI or surgeon I have ever heard of, both here and abroad, were in attendance. Some of the talks were really good, Dr. Puder gave a great presentation about Omegaven. This week the 100th kid will go on Omegaven.

Really, the second and third days were an opportunity to pull back the curtain on the wizard and see how doctors really are at an event like this. The whole event was very interesting and since the majority of the attendees were professionals most of the presentations were geared to professionals. I thought this would be my opportunity to hear some really mind blowing new ideas and ground breaking presentations, but no. I felt like there was some good info but I also felt that most of the speakers were afraid to propose any ideas or techniques that were "out of the box" for fear that another professional might disagree with them. I felt like almost every professional was dancing on egg shells during their talks.

This may have been because some of the doctors that were in attendance arrived at the event with an idea of how they felt about, Omegaven, Bacterial overgrowth, and feeding techniques, etc.. and no matter how good the other doctors presentations were, they were not going to change their minds. It was almost like they were able to filter out anything that didn't agree with their perspective. That was very frustrating to see and a bit disappointing.

All this being said, there were some great presentations and I met some great parents and met some great doctors. I even met some great short bowel doctors from international hospitals like Paris. After having met these people, I would have no problem traveling abroad to certain countries with Ellie.

Interesting things I did learn:
  1. In Paris they rarely feed by tube feedings. They follow the natural physiology of the human body and feed by mouth as soon and as often as possible. This is also the reason that they don't like to do tube feedings at night.
  2. We need to get Ellie involved in her care ASAP. We need to tell her all about her CVL, pumps, feeds and all of her supplies and explain what she can and can not do with them. This comes from a nurse that specializes in the transition from pediatric to adult care that told horror stories of 3 year old waking up in the middle of the night and unhooking TPN/enteral feeds, turning off pumps, finding syringes and accessing their own line in the middle of the night (that last one made me want to barf) and a few other things that made my me want to run out of the room and call Gib immediately.
  3. There are many, many different types of motility drugs out there that all target different parts of the digestive system.
  4. I got an education in line care after meeting a 15 year old boy who is on TPN and doesn't dress his line, swims in lakes, ocean, pools and rarely changes his cap. He is healthy and has had his line for over two years now. It made me flinch when he showed me his undressed line during lunch, but I guess it just goes to show that there are many different ways to skin a cat.
  5. That some GI docs don't treat bacterial over growth mainly because there still isn't a truly good way to test for it.
  6. The last thing I learned is that there are some very smart surgeons/GI docs out there. I we weren't so amazed and happy with our current suregon and team we would feel lucky to have them take a look at Ellie. And then there are others... that I would purposely drive past their hospital in favor of another.
All in all I'm glad I went and will probably go to the next one 2 years from now. It would have been nice if all the doctors that were in attendance were a bit more open minded, but.. what are you going to do. I think Gib is actually surprised that I didn't see that coming.


Anonymous said...

So happy to read you were able to attend. Personally, we have been fighting the doc about nighttime feeds since day one. Just doesn't seem "natural". On the topic of B.O., we have never tested, only treated when symptoms arouse. Is Ellie on a PM of antibiotics?(sorry, couldn't remember) Wouldn't it be great to attend the next one w/ our kids and NO CVL?!! Abby, the 100th child, is that counted for Boston only pts or countrywide? I am curious to know Ryan's place with Omegaven.
Ellie, you are such a character and hope to someday meet you. I need a playmate for Ryan since his iron levels are up....he is bouncing off the walls!!!

Anonymous said...

Uh, I meant AROSE, SORRY.

Anonymous said...

Abby that sounds like a great event to be able to attend- I'm glad you were able to go!

I'd be interested to know about all the different motility drugs you heard about. We have SUCH limited access in the US, and even counting all the banned ones I can think of, I only get 6...

Scary to think about a 3 yr old accessing her OWN line- we heard a horror story about that in CHB- one of the 4 yr old pts got a syringe and accessed herself- the nurses walked in right in the middle of it... the kid's comment? "Its ok, I used alchohol!".... Can you imagine???

Guess you better educate Ellie- because it seems she's a sharp cookie and will probably figure out these things on her own otherwise! :)


Peter's Mom said...

Thank you so much for posting about the convention! It was hard not attending, as it looked like it would be so interesting. Peter will be 3 soon; I will keep your tip about educating him in mind as he is beginning to investigate the pumps and syringes more.


Anonymous said...

I'm a pharmacy student doing a TPN clerkship in Thailand and I'm come across to this blog by searching Google.. with a keyword 'Omegaven'

I just try to tell you that how incredible you've did!!
in Thailand there's no Omegaven available,
and I've seen many infant developed cholestasis in the NICU.

This blog is an important resource for me to believe that Omegaven is the best choice for infants required TPN.
P.S. Please known that I'm the one who personally adore you two.
- - kkhanita@hotmail.com - -