Checked in with Ped GI

Yesterday we drove to Anchorage and met with Pumpkin's GI doc.  She was pleased with how she is doing.  She said that Pumpkin has come a long way since the last time she saw her.  On that visit Pumpkin weighed about 68-70 lbs and was not diagnosed yet.  Now Pumpkin weighs 73 lbs and has an NG tube - which was a big step for her. 

Pumpkin is on her 5th week of enteral nutrition, the second week using the NG tube with Peptamen Junior.  She is doing much better right now - less abdominal pain, no diarrhea for about a week.  She is having joint pain in her right wrist.

The doctor is increasing her feed to 8 cans of P.J. per day.  Hopefully she'll start gaining again.  She also discussed starting 6MP as soon as Pumpkin is over her current cold.  Poor Pumpkin has a ton of nasal drainage and evening fevers.  No fun with an NG tube.  In 3 weeks she'll be able to start increasing her oral intake of food.  Pumpkin told her that her favorite food is steak and potatoes, and so the doctor has okayed her to start with that.  :).  Really?  I would have thought something soft, but she said it's good to start with a protein.  I hope her gut is up to that after a liquid diet for 8 weeks!

The doc also showed Pumpkin a Mickey button (and a Minnie button).  These are small tubes that go through the skin right into the stomach.  Unless Pumpkin can accept that she needs to learn to insert the NG tube manually, she may need to go to another method to get her supplemental nutrition.  The NG tube has to be changed every 4-5 weeks.  The Mickey would only have to be changed every 3 months, and that can be done right at home.  It's really quite small.  I think it would have its advantages.

Overall, I think we're at a good place right now.  Pumpkin is gaining, albeit slowly.  She has accepted the NG tube and has done two weeks of it already.  She even over at a friend's house spending the night tonight!  She brought all of her formula and syringes with her to start her feeding and refill it tonight with her.  Now that is a real friend who can look over this and invite her to spend time with her anyway.