Friday, February 12, 2010

We made it to the appointment....

and back home to tell the tale.

The appointment went ok (I think?!?).
We first headed to the imaging center and he had an abdominal x-ray. Then we trekked to the GI area to see Dr. M-R ...his abdominal x-ray looked good and he was cleaned out well. I think we may have figured out what works for that part of his system, for the time being. ::knock on wood:: That made me VERY happy to hear! I can't help but feel we accomplished something, as far as that's concerned.

Then we started trying to explain his newer issues that he's been complaining "stuck" in his throat, distention, refluxing and swallowing his "throw up", not tolerating his usual night feeds/switching to day feeds, chronic sinus infections, not getting his minimum amounts in, etc. It was rather difficult explaining everything so that she understood how it all fit together....what came first, how long it's been going on, what we did about each of the issues and what did/did not help each, what the other doctors have said, etc. All the while trying to keep each of the kids quiet and say the least, it was a long appointment!

In the end...
-She is changing his formula to a more concentrated type to fit more calories in with less volume.
-He will be admitted (she hopes with in the next week or two) for an impedance probe which will show her how much acidic and non-acidic reflux he is having in a 24 hour period.
-We are doing another 3 day intake count to see what he's actually getting both orally and through his tube.
-He is to have 1500 ml of fluid per day (approximately 50 oz, I think? That's formula and 'free' water combined....through his tube.)
-We will be playing with amounts/rates with his tube feeds more often to see what he can tolerate and what he for sure does not.
-He'll also start getting tube feeds at school.

She discussed trying a GJ-tube vs. a Nissen Fundoplication, but before deciding anything there, we need to see how much actual reflux he's having so we can get a better idea of what would help best. Or if it's even another problem completely. We also discussed possibly adding medicines, "prokinetics", to help his stomach digest quicker....I think in the end it was decided that she would contact the neuro to ask their opinions on trying either erythromycin or baclofen.

The talk of the GJ-tube and Nissen Fundoplication, with the option of trying med's, is where Bryan and I were getting lost. The conversation was jumping all around and oddly, also in circles. I'm thinking we'll take this one step at a time...we have to do the impedance probe first. Then we can clarify the things that we didn't understand fully this time around (and probably discuss even more) at our appointment with her next month.

One day at a time.....
Tonight we're camping out in our living room to watch the opening ceremonies of the winter Olympics....but I can't help but notice only 1 of us is still awake. Hmmmm.
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