This is the story of Eleanor Brogan who was born in April 2006. She was born missing 90% of her small bowel and 20% of her large bowel. This made her "Short Gut" or "short bowel", hence the name of the blog. Currently she is being treated by Children's Hospital Boston. She was the 23rd child to go on the new lipid for TPN, called Omegaven. Which has saved her liver, kept her off the transplant list and we believe saved her life.
As it gets colder this fall we are really appreciating Ellie wearing pants with a waist. A little thing for most people but when she was smaller pants weren't an option since they would go right over her ostomy and make the bag fall off. Overalls or a dress with Baby Legs were good for a while but were tight on her legs and would leave rings when she wore them last year.
This year she is big enough that the ostomy bag rides under the waistband and doesn't dislodge anything. A big change for us and a new world for Ellie, who thinks that dropping trow in the living room is great fun...
Fortunately her grandmother has been supporting this new bit of fun and Ellie has all sorts of fashinable styles for this fall. There is always a onesie underneath to pin her central line and keep her from playing with her plumbing but pant make life a lot easier and may even lead us towards the potty again after a nine monnth layoff.
What happens when you ask Ellie to smile and open her eyes at the same time....
Our ongoing challenge is to move Ellie forward towards eating like a typical two year old and getting away from the IV and tube feeds as much as we can. Tube feeds have their purpose but they aren't our goal for Ellie so we keep looking forward toward real food for her. To get from point A to an oral feeding kid takes a bit of work.
We have heard from other parents asking about what she eats and how so here is the rundown of the day for Ellie's feeding. All of this should come with the caveat that we 'cheat' a bit because of her ostomy- if we feed her something that gives her gas, or diarrhea, its effect is minimized because the ostomy is a great escape valve for both of these things. This will all change significantly when she is reconnected and has to deal with gas and other side effects of a varied diet.
Her feeding day is quite regimented and begins with her coming off the evening IV around 8 in the morning. The overnight combination of IV and g-tube feeding at 40 ml/keep her happy overnight and she still sleeps between 10 and 12 hours each night. Who says tube feeds are all bad?
As soon as she comes off the IV we give her a glycerin suppository to help her poop which usually works like magic. We'd like her to poop on her own but it just doesn't happen so most mornings we 'clear the decks' as soon as we can and open up room for more food. If we don't do this, we can be sure that her ostomy output will be increased for the day- if there isnt anywhere for the food to go it goes out the ostomy along with a lot of fluid. Remarkably her poops have good consistency, something that isn't all that common for kids with short bowel.
Poop Dance!! (pay no attention to the mess, Abby has her knee 'scoped on Monday and we are still in recovery mode)
With a path cleared for food we wait and by 9 or 9:30 her blood sugar has come down from the IV to make her hungry for breakfast. This hunger drive makes it a lot easier to feed her and keeps meals fun instead of a battle. Breakfast is usually some kind of eggs (scrambled, hard-boiled, or fried and mostly whites) a slice or two of avocado and maybe a slice of ham along with her first cup of elecare for the day, about 100ml (3+ ounces). We don't tell her how foul it is and she keeps guzzling it, a fair arrangement.
Around 10 she comes off her G-tube pump. Since midnight she will have gotten about 3-400 ml of elecare through the tube which brings her to 4-500 ml for the day so far. Now we have a free kid until bed time.
'Ellie free. No milk bag!'
At 11 she gets another 100 ml of elecare. 5-600 for the day.
between 12 and 1 it is time for lunch. Lunch means some cold chicken, ham or turkey, some cooked vegetables like peas, broccoli, green beans, or asparagus and some plain noodles or noodles cooked in broth. She also likes soup and will drink broth, which the nutritionists tell us is great for her. And another 100 ml of elecare. 6-700 for the day.
Mmm. Double fisted Broth.
Nap time runs from 2 or so until 4 and ends with a second round of glycerin. Another poop around 4 and we are ready for a snack or third meal of the day along with another dose of elecare. 7-800 ml.
Dinner is a repeat of lunch. Meat, noodles, vegetables, and a final round of elecare that brings us up to around 900 ml for the day. Usually she a version of whatever we are eating, but if it isn't an Ellie friendly meal, then she eats her own food. And these days a bit or dessert- a couple of berries or a shared all fruit popsicle.
What's you name little girl?
Then it is off to do the TPN routine, hook Ellie up to her g-tube pump and TPN by 8. After a round of stories she is usually asleep by 8:30.
Then we reset pumps at midnight, add up totals for the day and other than changing a very wet diaper at 4 AM because of the huge volume of TPN that it our day until we start it all over again tomorrow.
All hooked up and ready for bed
All told she will have had around 1100 ml of elecare, three real sit down meals, one heavy snack and two poops, with the associated poop dances to celebrate each one:
This schedule seems like it might take the fun out of the day but really we manage to have lots of fun in between all of these pit stops and the periodic feedings, dresisng and ostomy changes don't really get in the way of things. She is so good at being the patient these days that they are remarkably quick and we get on out way to having fun:
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:
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.
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.
There are many, many different types of motility drugs out there that all target different parts of the digestive system.
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.
That some GI docs don't treat bacterial over growth mainly because there still isn't a truly good way to test for it.
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.
