Friday, September 14, 2012

GI Follow-up...

Max's GI doctor is a gem.  They all are, really.  But, Dr. J. is new to the crew, and we really like him.

Some people must think I gush about Max's doctors a little much, but when these mere mortals put on their scrubs and white coats, they turn into super-heroes to our boy, and to us.

Dr. J. is always quick to change Max's diaper, or to move him to his chair while we're gathering all of his feeding and diaper changing accoutrements.  Today, was no exception.

We had quite a trip out to visit Dr. J. today, as he didn't have any appointments at the main campus for a follow-up in our time frame to see him.  The satellite office was about an hour away from us.

This follow-up was to talk about how Max has been doing on the Jtube eating, and just general catching up since he's been home.

Max was a jabberwocky in the office.  He was talking up a storm!  When we got into the office, and Dr. J. asked him how he was doing, Max said loud and clear "I GOOOOOO!"  Which, of course, is I'm good!

And he is doing good.  He is handling the jtube feeds well, he's nearly off of the medicine he came home on,  and he's got a lot more energy.

All of this means that we can start moving him back to his normal feeding schedule, but it will take some time!  We got quite a schedule to take him off of the last anti-nausea medicine he's on...but ramping up another medicine, Flagyl, to help with the poo problems he's been dealing with post surgery.  Then we've got a schedule to start feeding him a couple of hours a day into his gtube instead of the jtube, then move all to the gtube, then move to bolus feeds instead of continuous, then we can introduce some blends into the bolus, then go all the way to blends, bolus feeds!  Whew...good thing he wrote it all out for us - that's a lot to keep up with!

We are so ready to get him off of formula again.  After seeing how well he did with real food, it's hard to make that powder and water every day.  We got some confirmation to that idea today in our visit, when Dr. J. told us that one of his colleagues in GI did an Elecare Challenge.  A self inflicted challenge to eat only what his patients on this formula can eat, to see what it did to his GI Tract.  He drank only Elecare, and ate sugar candy (which is the diet for many kids who are allergic to so many ingredients in regular formulas), and the results were a ton of gas, and loose stools and plenty of discomfort in his belly.  Hmmmm...sounds so familiar!  Kuddos to that doc for giving it a go to see what it was doing to the patients he treats.  Now...let's get Max off of it!

All in all, a great follow-up visit.  And we've got a good plan for going forward.  The next follow-ups are with Endocrinology, and Metabolic Clinic.  Then, hopefully we can steer clear of the hospital for a while!


Elizabeth said...

Seriously, your DOCTOR changed your son's diaper? Helped you? Seriously? What planet do you live on?

Deana said...

He jokes that he IS the poop doctor. But yes, he's always quick to help with the diapers, and can actually put them back on correctly!

Amanda Jaksha said...

Impressive he ate that stuff! Glad you are on your way back with blends.

Deana said...

Amanda, isn't it? I gag just making the stuff! I can't imagine drinking it! Makes me shudder! Do you see GI?

Smithsholidayroad said...

hi there Deana, it is so good to catch up on your news after such a long time! max is so grown up and looks awesome!!!,
Thanks for stopping by my blog and lovely to be back in touch! Bron

Deana said...


I don't comment nearly as much as I read! I've enjoyed your travels, and the welcome of Woody!