Just so you know I will be updating on Twitter. These are quick updates that are added to the blog at the time I write them. So if you want the latest information you can look at the right side of her blog. (http://avaslifewithcdh.blogspot.com) OR you can follow us on Twitter. I will be using this a lot tomorrow.
We got here (Iowa University) at about 2 pm. I already had to put my foot down about a “single” room. There is no way I will stay in a double. I am crazy enough about germs. I would go home before getting her sick. I know some people think I am overly protective…well I AM! AND I will not apologize for it.
The day started with a bath and Ava is feeling especially good today. As you can see her tummy went down nicely. It is hard to see a “sick” little girl when she is doing so well and is smiling and playing happily.
The girls said their goodbyes and kissed her before going to school. I did not let it all get to me I was going to be strong and I know that Ava will be fine. It will be very soon and she will be back home playing with her sisters.
They sure love her! AND it shows.
So they started the WONDERFUL “go lightly” about an hour ago. Good news is it goes directly to her stomach because she has a g tube. THANK YOU, LORD. I have heard this stuff is horrid tasting. Now with Miss Ava she can’t tolerate high volume so about 6o ml’s an hour is probably where we will stay. (Most people do 250 ml’s an hour.) MEANING we will be at this ALL night. But I am the first to tell anyone we can NOT push this child.
They started an IV and she cried. I don’t blame her. Mine hurt too at the dentist. It is bad when it hits the vein….
We were trying to get her to go to sleep but I don’t see that happening. We are watching Imagination Movers right now. BUT we came with about 40 dvd’s so something different should be on.
I had to show you the picture of Ava on the pot. OH and we brought her princess potty from home!! The smile is STILL there!
We are in room 66 on third floor. Her surgery is scheduled for 7:15 am tomorrow morning. She is the first surgery of the day. That is great news! Following surgery she will go to the PICU. We just talked with Dr. Shilyansky and he is very optimistic that she will come out great. We are hoping the ventilator will come out after surgery but we have to wait to see how well she is breathing and her vital signs are before knowing for sure. Also she WILL have a central line placed, for safety measures. We just don’t know how she will do and it is better to be safe than sorry. I was hoping for just a PICC line but doc thinks she will have another central line.
Thanks for stopping by and I will be updating as soon as I can. I feel a strange sense of calm. As with any hospital stay Ava avoids the bed. SMART GIRL, huh?