Friday, May 29, 2009

Swallow study…;(

Today was a very long day. We got to Iowa City ay about 10:25 am. Ava was not interested at all. Who can blame her from what she remembered last week with the enema study? I reminded them twice that Ava can NOT tolerate any amounts over about 65 ml’s an hour. I also told the radiologist…..however when I saw Brian cold stare I quickly realized they were giving her lots more. She received about 120 ml’s I believe. As soon as I realized what was going on it was too late…..she threw most of it up. I don’t know why they don’t listen to me. Wouldn’t it make more sense to put in whatever she could tolerate and wait to see where it goes? Oh no it makes more sense to get as much in as they can and then make her have a sick tummy for the rest of the day. Arrrgghhh! Some days I want to throw my hands up and say, “Why am I here? Can you hear me?” But mostly I want to grab her in my arms and run as far away from any hospital as we can. Is it so hard to listen to a Mother?

See her fear?


This is kind of hard to see but this is a picture of her insides.


Daddy helps calm his precious.


Ava’s big tummy. She was finally finished and this was her last picture after the final x ray.


The test showed that Ava has huge dialated loops in her small bowel. They could not find the narrowing parts but think they know where they are. They think they are just before her large bowel but still “in” the small bowel. The radiologist said that Ava’s bowels are three times the size of mine. Yikes that is a LOT of air. I am so fearful of what is to come for Ava. Will this surgery on Friday be the fix we need? Will she become worse? Will she died? Oh my mind is going wild. I feel her apprehension of the hospital. She gets so worried each time we go there. As we pass by her floor door she shakes her head no and starts to cry. I am thinking we will be here next week at this time. I thought I was getting myself prepared for her surgery but instead I’m feeling worse about it. I know it has to be done but wow is it hard to face.

Ava is SO special that she gets the royal treatment……any amount of stickers her heart desires!


We were at the hospital doing the test for over 4 hours today. They did the initial test then we took pictures once an hour. We shall see what Ava’s surgeon thinks about the findings.

Since we were trying to pass time today we went to the medical museum again today. This is an actual lung that was hurt by pollutants.


This is a simulation of our heart.


Ava next to a very old wheel chair.


AND we found a quiet place to hang out and I found this gorgeous plant. It was so beautiful we thought it was fake. It wasn’t it was VERY real! How beautiful is this?


Thanks for stopping by. I will leave you with this Bible verse and a prayer.

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.
Matthew 11:28-30

“God give me the strength tonight to rise to this challenge and lead us down the healing path for Ava. I know you love and care deeply for us all. Thanks for your patience as we struggle to figure this all out.”



Lacey said...

Terri, I know its hard, but don't let your mind wander to those thoughts before surgery. It will just make you crazy. She will be fine, she is a fighter.

Zachery&Allie*Mommy said...

I know how you feel Terri, I HATE when they don't listen to the mothers, we are the ones that take care of these childern 24/7 we know them, better than anyone else..I have had times at Childrens Mercy,where they wouldn't listen and you just really want slap them and say Listen to ME! I watched your little film on Ava that poor little girl has been through so much:( I can't believe that IV burnt her arm like that, we also have has IV's get infected, nurses not doing well hand washing and giving Zachery hemphelious, Idon't know if i spelled that right, after we were in the PICU for 3 weeks he was getting better and then down hill all over again...But just remember that she is a fighter, and she needs mommy to stay strong to, I know sometimes we feel like giving up, but then we look at THEY haven't given up I'll keep you both in my prayers

funncrazymommy0208 said...

ava is a beautiful strong little girl your family is in my prayers