We got home Sunday after a fabulous trip to Charleston to be there as Elie’s aunt, Dana, married Elie’s (now official) Uncle Nick! Elie got to see most of her family, hang out on the beach, dress up fancy, and meet some wonderful new friends.
Monday we had an appointment with the muscular dystrophy clinic and then a follow up with Dr Brooks (have we mentioned how much we love this woman?). She clarified some discrepancies in therapy techniques we learned in the hospital. We’ll be administering percussion and then the Cough Assist at least twice a day moving forward.
Yesterday I met with Bayada nursing care, which went very well and I’m very much looking forward to the help!
Today we are headed back to the surgery clinic since Bean has had some leakage/irritation/pain/interrupted sleep since we got back and we want them to evaluate her tube for size/infection so we can all feel and sleep a little better.
So it’s been a busy week and half, but I promise to post pictures from last week soon!
UPDATE: back from our appt– Elie’s T-button stitches were all infected. The doctor went ahead and cut them all off even though they were supposed to dissolve. Elie seems to already feel so much better with them off! Antibiotics to be purchased and hopefully will get rid of the rest. To anyone considering GTube with the t-fastener buttons, I do not recommend them, just go with old fashioned stitches, so much easier to clean, with less irritation.