This has not been a great week for us. We had to tell Drew that yet again we would be going back to Tampa, not a happy camper. This is so hard for him. On Monday at Drew's soccer practice I slipped and busted my good leg really bad. I didn't want to admit how bad at first because I needed to be with Rylee. I was not about to not be with her at the hospital. I NEVER break down but in the parking lot I just fell a part. I hate to say why, but seriously WHY????? I see the ortho on Monday to see if I will need surgery. It's better but not great. The loud popping sound was not a good sign. Oh well I will get through this with Grace too. Having a fused leg makes the rest of your body take the brunt of everything and the left leg obviously had enough. I'm so grateful my Mom is here to help. I just wish she didn't have to.
Ok, on to Rylee girl. We did the 48 hours in the SMU( love this area, private rooms) She showed no signs of seizures which was great. On Friday she went for her swallow study and she scared the crap out of them. She started to do what she does to us. The test that was suppose to take 3 hours was ended in 15 minutes. She passed liquids ok but when they gave her food, it was bad. The food is getting caught in the exact area that airflow goes through. There was no air in or out and then she started to aspirate into her lungs, not good. Thank God I know she does this because the people doing the test were trying really hard to not freak in front of me. At this point she is not able to eat by mouth. I'm not really sure what happens next because the Dr's need to watch the DVD of the test. AS soon as I left the room they were on the phone with the Dr's so we should know more by early next week. They are also going to move her feeding tube to a different place in her intestines and make a 2 valve port. The hope is that we can feed her through her intestines but vent her stomach before she starts to vomit and put her zofran. She has lost over a pound in the last week.
Ok, off to get the kiddos up.
8 years ago