I have been trying to post all day but Arianna is keeping me so busy. Last night she did well and dropped to the mid 80’s only a few times, but still scared the crap out of me me I heard her machine peeping. I guess I was just so scared I would not hear her alarm and something bad would happen. She is back to playing, walking, crawling, and eating! We are trying to get used to the oxygen but for the most part its going pretty well. I feel so bad because she gets all tangled in her cords. We can no longer leave toys scattered throughout the living room because it will get snagged on something and it doesn’t look like that feels too good when her face gets pulled. Poor baby ☹ It’s not like we already had a lot of room with Arianna’s toys taking over the place, now we have a huge oxygen tank in our living room. I think if we just put a lampshade on it, it would blend in! ☺ I don’t know what she did but all of a sudden tonight she let out a huge cry and Daddy said she ripped the cannula out her nose and some tape off her face. Then she looked at me and sure enough she did pull some of the tape of and even took some skin with it. So now she has a boo boo on her face right were the tape is. So much for my good tape job last night. I don’t want to mess with it because it will just get more irritated. I’ll leave it alone until I absolutely have to change the tape.

Tomorrow will be the first time taking her out in public, but it’s just to see her pediatrician. They gave me this handy little portable tank to take with us. They say it should last 3 hours but I’m not trusting anyone, so I’ll take an extra. I don’t know why I’m nervous about taking her out, I know I’ll be fine but I guess it will be different having people stare at her. Its just that so many people have told me how healthy Arianna looks and if it wasn’t for me telling them what is wrong with her no one would no. Now I feel like everyone will look at her like, “Oh poor kid, she must be really sick”, and I don’t like that feeling. I know, who cares what they think, this is my daughter and she is just fine…oxygen and all!

We finished with oral steroids today, just have 3 more doses of the albuterol left and 3 more days on antibiotics. We will continue with the FloVent I guess until we see pulmonolgist, which by the way they have me scheduled for April 8th. Yeah right I’m not going to wait that long. I’m still waiting to get a call back from there office. If I don’t hear something by Friday I swear I’ll go to the office and make sure I get an earlier appointment. Can you tell the week stay in the hospital had gotten to me!!! I’m sick of getting no where being nice, and if I have to start getting more demanding than I will.

Tonight I listened to her chest and I don’t hear any wheezes or anything so we’re hoping for a good report tomorrow. I do know that she needs her O2 still because she rubs her cannula out her nose at night and her sats will immediatly drop. Hopefully this is only a short-term thing and we can get off this O2 soon.

I did get the medical report from our last visit with the pediatrician before our hospital stay and in the assessment and plan section he talks about her poor weight gain and contributes this to her low saturations and feeding difficulty. He mentioned the upcoming swallow study, which we already ruled out anything going on there. He also wants a more in depth look at her cardiac and pulmonary issues. So I think he might be thinking there is more of a cardiac issue going on there. I wish he would be more straightforward with me. I’ll be having a nice little chat with him tomorrow. Our appointment isn’t until early afternoon but I’ll let you all know how it goes.