Grace started EN on 1-5-13.
Grace was found to have microscopic inflammation in different parts of her colon and her TI. The next day the GI dx her with Colitis. Upon discussion with the GI we decided NOT to do steroids approach for Grace. Given her young age and the uncertain of the changing of her dx we decided to go this route. EN has no side effects and supplies ALL nutrition.
GI ordered Enteral/Elemental Nutrition or simpled called EN or EEN.
Press here for a link explaining it in further depth. Press
HERE
Her GI has put her on a formula called Neocate EO28 Splash.
She also has a N-G (nasal gastric) tube in place to deliver her feedings. The tube goes in through the nose and down to her belly. The reason for the tube is she has to drink a good size amount of a rather...how do I say in a toddler term, yucky drink!:biggrin: This way she doesn't have to taste it and we don't have to beg her to do so.
OK onto the feeding themselves.
Our GI ordered a step up program. We start with 10ml of formula an hour and increase every 24 hrs. by 10 ml. until we reach 80-120 at one feeding.
She will need 6 boxes of Splash a day to thrive. They suggested since we're doing day time feeding that we have 3 four session of feeding time to start with.
Now you don't have to do day time feeding this can be done during the night.
Grace has a feeding pump that's programmable with times and amount of formula to be delivered. It also has alarms that go off when she done or if theirs problems with the tubes. We were given to sizes of bags, 500ml and 1200 ml. 500 works better for towns trips and 1200 works good for day/night feeding in the house.
It took about a week for all the pieces to fall in place.
We had a lady come from the medical supply company. She showed us the working of the food pump.
A nurse also came to our home and inserted the tube for us. Also gave good instruction on how to take care of her during this time.
This same nurse will be our primary nurse for home visits. She will come out once a week at GI's request and monitor Grace's vitals and make sure her tube is in place.
I talk with Grace the morning of the tube placement. She being three didn't like what she heard BUT we said you have no choose because we need your boo-boo in you belly to heal. There was a fight when the tube was put in and it took two tries to get the right placement. The nurse did a wonderful job under the circumstances.:frown:
Observations so far,
She seems tired and not very happy, don't blame her one bit.
I decided to up her program to 60 ml an hour because I know from her scopes that nothing is compromised in her stomach and she was starving before the EN so having it drip that slow for a couple days was only going to make it worse.
All way remember to check with you doctor or nurse about decisions your concerned about making:ybiggrin:
Another nurse will be coming out today to check things over and answer any more questions from us. We will be heading to town. We have a backpack the the pump and feeding bags fit into. The pump batteries last for 24 hours, so she can be mobile.:medal1:
If you have any questions or something I forgot to add please let me know. This thread is a work in process I will be tweaking it:thumright::heart:
