Feeding Clinic, part two

Yesterday, we took the Bean to the feeding clinic up at OHSU.  It was a follow-up to the swallow study and progress report.  Andi weighed in at 14 lbs, 11.8 oz's., which is an increase from her last weigh-in back in June (14 # 7.5 oz)  Not as much as I would've hoped, but still an good jump since they saw her last on 5/3/11.  They were rather impressed, actually.

Andi's swallow study was explained in English, not the medical jargon we found in the report.  Made understanding where she is a lot easier, and caused a little light bulb to turn on above my head.

Andi's swallow study shows that she has silent aspiration with thin liquids, like water, and pudding thick liquids.  Aspiration is when the parts in the throat aren't coordinating right to send the food or drink down the stomach pipe, rather than to the air pipe.  So, her swallow isn't yet protecting her airways, and the silent part is that she isn't showing signs of the stuff going the wrong way, such as coughing & trying to clear the throat.  So... we have to keep on the with the purees and get her coordinating and used to eating orally.  Basically, for the past year she hasn't had to do eat and drink by mouth, so it's weak.  However, a big ol' bright light bulb went off during our meeting, because of something I did, actually.  When we went to the swallow study, I brought some food, spoon, her nosey cup and her straw.  I mentioned that she can take fluids by the straw, and so we did 3 out of 4 fluids by straw, rather than by her nosey cup.  In hindsight, I never should have offered that, and had her do her study using the nosey cup, which is what we had been working on.  Although Andi can suck fluid up the straw, she'd only done in a handful of times.  Fluid coming up a straw is faster and less controllable than taking stuff by cup, and that lack of control gives a kid with swallow coordination issues, less time to prepare to for fluid.  Also, you get more fluid in with the straw, so, in addition to having less time to coordinate the swallow, you're taking in even more fluid to process.  Basically, as I see it, by doing 3 out of 4 liquids by straw, set Andi up to fail.  The fourth was done by spoon.  Now, Andi does have coordination issues, weakness, and as I see it, it's due to her not doing it... but, we've been working on it diligently for the past month or two. I think by doing, with more time, Andi will be doing better.  Wait, I don't think that, I know it.

Today, for lunch, Andi had some sweet potatoes with a little bit of cinnamon, and then a Neocate cocktail by g-tube.  I was able to capture a picture of how lovely that looks when it leaks out the g-tube.

Anyone want to do our laundry?  There's a common saying, 'don't cry over spilled milk', where in our reality, you cry when it's spilled milk vented out of her stomach.  It stinks, AND it is lost calories.

There has apparently been talk on how to resolve our leaky g-tube issues.  The Dr. yesterday said that one option is to pull this one and do the surgery again in a different spot.  My response, "two holes in her stomach?"  (One would be closed, but still...)  Uhm, no.  At least though this was the first suggestion of a solution, to which in my opinion, there is no viable solution other than getting her off of it altogether.  That's what I'm voting for... and hoping for.