May 24th 2009. G-Tube Learning and Med Weaning

So now we're almost into June and I haven't updated at all.  Yeah I can be a procrastinator.
Janna had G-tube surgery in mid April and did as well as could be expected.  She had a bit of trouble tolerating her old NG rates so we had to start off pretty slow but she was tolerating bolus feeds - (although she needed to be held each feed in the beginning.)
Now she's doing a bit better, she's up to her old 90ml/hr NG rate, which is what she was at before surgery.  We've already experienced Granulation Tissue and some stoma leakage and discovered wonderful products like:

"The Bone" a cath securing device used to stabilize her long PEG tube without the use of tape.
Calmoseptine a wonderful barrier cream to help sooth irritation caused by stoma leakage and lessen granulation tissue and Mepilex, so far my favourite absorbative/wicking dressing.

I've also managed to change her outer bumper to a 90degree "fixator" made by the good people at Corflo (UK) which has made stabilizing her tube that much easier and thus more comfortable for her.
One thing that is troubling is her gagging episodes.  She still has them, even without the NG tube so it's dawning on me that the NG wasn't causing them.  She'll cough and gag and gag until she vomits, sometimes it's just a gag out of nowhere.

I'm wondering if it's Neuro-related; if perhaps some of the muscles in her esophagus are floppy, working too slowly or not at all?  We'll be doing another swallow study in the next few months and hopefully that will shed some light on things.

Med weaning is going well.  It's nice to be finished with the Prednisolone.  The Amlodipine and Vigabatrin is slowly being weaned as well.  Soon, if all goes well; we'll only have 2 meds to deal with.  What a dream!
She's also shown some gains in her vision.  The improvements were drastic enough for our developmental pediatrician to agree that we must have quite good seizure control (Yay!).

Of course she's still pretty floppy, she has made some gains in head and trunk control but is still far behind her "peers" at almost 10 months old.  We've got a Physiotherapist that she's scheduled to see once every 2-3 weeks and we're hoping we can give her some opportunities to make the most of whatever mobility she'll be able to have.
So we trod on.  Some days are better than others.  We're still housebound the majority of the time because Janna doesn't tolerate moving around a lot.  Bumps, jostles and changes in position are difficult for her and will often bring on a gagging episode along with a vomit.  I hope that changes, it's difficult not to be able to go out and about with her, especially as the nicer weather is upon us.