Tests are scheduled

I just got off the phone with the pulmonologists office and they scheduled the CT's and bronchoscopy for April 8th. I was hoping to get this done sooner but they need to have two blocks scheduled for anesthesia since she will be having both tests at the same time. I just put a call into her cardiologist to let him know about the CT and find out if she needs antibiotics before the scope.

Arianna has been doing great. She is getting so good with her walking and even starting to run. She has been sleeping alot better since we put her bed next to ours. I have to admit I LOVE having her sleep right next to me in her own bed. I can reach my arm out in the middle of the night and feel her breathing, which reassures me that everything is ok. She hasn't needed oxygen the past 2 days...YIPEE!! She is not eating like she was last week but I'm hoping that will pick back up soon. We saw the nutritionist on Tuesday and Arianna weighed 18 pounds 8 ozs, which is a 4 oz increase since last month. She is slowly gaining but at least we're gaining!

Hope you all have a wonderful weekend!

Just when life starts to feel normal...

Isn’t it crazy how things can go from completely boring to having me in panic mode. I just got a call back from Arianna’s pediatrician and she received a response back from the pulmonologist regarding Arianna. He wants to have a CT of her lungs and heart along with a bronchoscopy (scope of her lungs) before April 8th appointment. So…here I am freaking out once again that she has to go under general anesthetia. Why can’t things stay calm for more than a week. We won’t know when these tests will be done, but we know they will all be done at the same time. When we were at the peds office last week I told her I did notice a slight change in Arianna’s energy and eating habits since being off the O2. She mentioned this to the pulmo and he suggested putting her back on 1-1.5 liters of O2 at night. But of course since we’ve seen the peds last week Arianna’s eating and energy has seemed to get a lot better. So basically its up to me, if I feel she is having a sluggish day then I am to put her on O2 at night. I have been checking her sats every other day and she remains in the mid-high 90’s which is right where she needs to be.

So my feelings right now…well I guess I’m wondering why they still want to do the CT and scope since she is doing so well. But then again I know there could possibly be something going on that we cannot see on the outside. We still don’t know why she went into respiratory distress and was hospitalized, requiring her to be on oxygen for 3 weeks. Its just so hard to put your child through something like this when they are doing so well.