Where did my baby go?

I know Arianna loves her Daddy and has been getting into the habit of wanting him at night but since she has moved to her own room I can normally get her back to sleep. Well not last night. All she wanted was her Daddy. I walked in her room and she just looked at me, cried, and said "no" in the mean little voice of hers, and pushed me away.

Okay....that was very heartbreaking for me. What happened to that little baby that only wanted her mommy?.

So Daddy ended up putting her in bed with him cause she was not about to sleep alone last night. I did sneak her back in her room for maybe an hour but that was it.

Then this morning she wakes up and I can just tell something wasn't right. She just acted very crabby and tired. Her eyes were puffy which has been the norm the past week. I check her sats and she was satting at 89 while laying down. So I leave it there for about an hour and she was satting between 88-91 so something is going on. (Kathy I thought of you as soon as I saw that number below 93...I was ready to pull the O2 out) I was told no to put the O2 on her until she dips below 88 and she only did that a few times and jumped back up. She did have a this little cough last night but nothing major. So I'm wondering if thats why she was so cranky last night.

I did give her the albuterol inhaler about an hour ago and that didn't do anything for her. Come to think of it, it didn't really help last time either.

After we laid in bed for 2 hours watching cartoons (thats how I can tell she wasn't feel all that well) we finally came into the living room and she is now playing on the floor with some toys. Normally, she wakes up running all over the place but not today. She seems more clingy and cranky and coughing as I type. I had planned on doing some errands today but not now. We'll just stay home and keep monitoring her throughout the day.

*****UPDATE*****

She fake smiled for me

She was so upset with me putting this on her. Right after this picture was taken I had to tape her cannula on and that tape has come off and on 3 times. I have to use the cloth tape cause she is sensitive to anything else.

I spoke to the pulmonary nurse to call in another script for her Albuterol and while on the phone Ariannas sats dropped to 84 so the O2 came out. The nurse told me to keep it on her today and just spot check her and definintly keep it on her while sleeping. We see the pulmonologist next week so it will be good to follow up with him.

Now we are sitting on the couch coloring and I'm trying to brib her with ice cream but she won't eat it. That's a first.

We had to cancel our playdate we were going to have tomorrow. :( I was really looking forward to that but we can't risk this being a virus and passing it on to another heart kid. I'll update more when I can.

****Another update****

This was the extent of our playing today. After I took this picture she got really cranky and won't even walk.

She took a nap for 2 hours and her heart rate is pretty high around 170-180 and is up to 1.5 liters of oxygen. Her temp is 103.5. I just put a call into the pediatrician and of course he isn't even our regular doctor. I'll let you all know what they say.

***next update***

The doctor couldn't even call me back but a nurse telling me he wants her to go to the ER. This pissed me off that he wouldn't even talk to me. Rememeber this is a doctor that probably didn't even look in her chart to see what was wrong with her. Can you tell I don't like this guy. So I stressed to her Arianna's condition (DiGeorge, lund disease, heart defects, etc.) and told her our pulmonologist told us to keep Arianna away from the hospital during RSV season cause she could not handle such a virus. I've emailed her pediatricain in hopes to hear back from her. Ariannas heart rate is back down to 140 but is still on 2 liters of O2. Her temp is down to 102.5. Our O2 tank will only let us go up to 4 liters so if she requires anything more than 2 liters I'll definintly jump in the car and head out. At this point I'm waiting it out for a little bit longer before heading to the germ-filled ER.

**8pm update**

Arianna held sats in the low 90's for 15 mintues so we took the cannula off. She cried for the pulse ox lead to come off so I took it off as well. She went straight to her slide to play. Poor thing was scared all day to even walk while she was wearing the cannula. I'll just keep checking her as she plays and hopefully will only need the O2 tonight when she sleeps.