we're not coming home this weekend. they've narrowed down the possibilities of what's causing justin's shallowed breathing. he doesn't have any heart or lung problems. they suspect the shallowed breathing is a symptom of the chiari ii malformation (which we knew was a possibility), so tomorrow they're going to do a 12 hour sleep study test on him. they'll check his breathing patterns to see if it's from the chiari. another option was for them to give him lasix to see if it would clear any of the fluid that's hanging out around his lungs. he doesn't have an infection, so they're not sure where it's coming from. and they don't want to give him the lasix because that will cause for us to have to cath him more frequently than every 3-4 hours. hopefully this sleep study will tell us what we need to know to get him home. if it is from the chiari, then he just will have to come home with oxygen. that makes it definite that we won't be able to leave until at least tuesday because we have to wait for a case manager to hook us up with all the goodies for that.
this is so frustrating, but i'd much rather deal with it now while he's here than for us to come home and have to turn right back around. i'm just starting to get homesick. we want nothing more than to go home and be with both madi and justin, at the same time, in OUR HOUSE, with anyone and everyone that wants to come visit. it's so frustrating that only two people are allowed at his bedside. i want to be able to see our family's facial expressions when he tries something new every day or when he does something cute. i am just so ready to come home.
madi came to visit today with my parents and sister, and madi was awesome. she got to hold her brother and help feed him. she was so excited. she is so proud to be a big sister, it is so cute to see the look on her face when she sees her baby brother.