Sorry for the delay in posting after returning home. We’ve been enjoying being in our own home, sleeping in our own beds, and just generally trying to get back to normal. Adela has been in a wonderful mood since we got home — more playful and happier than we’ve seen her in quite a while. Also, we at least know now that the whole experience didn’t traumatize her — last night as she was trying to fall asleep, she got a little sad (actually started crying a little bit) because she missed the hallway at the hospital where we would all pull her around in her red wagon. Go figure.
From a medical perspective, we’ll have plenty of follow-up appointments to make sure we don’t have any relapses. We see one of her pediatricians tomorrow and her GI doctor on Wednesday. Both of them are just follow-ups to see how things were in the half a week since we’ve been home. As it stands now, we’ll be heading back to UNC Children’s Hospital on Sunday, November 21st to be admitted in preparation for Adela’s scope procedure. Sometimes these can be done as an outpatient procedure, however everyone involved agrees that, with Adela, it’s better to be overly cautious. We’ll check in Sunday, the scope will be Monday morning, then we’ll leave Tuesday.
She came home on more medicines than we checked in with…not surprising. She’ll stay on her steroids until the scope to see how things are progressing plus she’s getting a carnitine supplement to help with certain suspected metabolic issues, her reflux medicine, antibiotics to help with her intestines, and her specialty vitamins. Plus she’s getting sixteen hours of Elecare a day until other foods are added back in to her diet.
Now, for some fun pictures and a video…just so you can see how happy she is.