Day 2

Have I mentioned we love this place?

I mean, every single thing that makes a child feel more comfortable, less afraid, and keeps them occupied has been done. 

Like the waiting rooms....

They have tvs on the floor. Seems simple, but she loved it! She can actually see the tv while she plays and colors. They had a stage, which was perfect for our performer extraordinaire.

When they call you back into the rooms, there are no hard back chairs to be found.

Every room has a couch with a tv that has a video on demand service. There is just about every Disney movie ever created available. She got the pillow that was offered, turned on Monsters University, and snuggled up. It is the perfect exam room. 

They also have stuff on the walls, like this heat sensor. You press your hand against it and it shows the heat from your hands. She loved it 

{so did her daddy, for those of you who saw his facebook picture earlier. Yes, that really happened, yes I am embarrassed, yes he is just as bad as she is!!}

Now, onto the good stuff :)

Her first appointment was with the ENT and speech pathologist. They wanted to do a swallow study to re-confirm that she is no longer aspirating. It was done differently than at Vanderbilt. Instead of it being an active x-ray, it was done with a tube run up her nose, into her throat. It had a camera at the end so we got to watch as she drank, ate soft food, and had regular food. 

She was a champ!! 

She hated it, but she did everything they asked. They were shocked. They told us they get kids her age to cooperate around 30% of the time. 

We took her and got a prize when we were done :)

Result: no aspirations!! 

We kinda figured that would be the result, but it's nice to hear it again. They did say that from the angle the camera is placed we should not have been able to see her tonsils, and they were very visible. David and I even noticed them without them being pointed out to us. 

The drs. all agreed that because of this, they are so interested to see her sleep study.

Next appointment: GI. This was quite interesting. 

The dr was so kind, and she really listened to our concerns about the possibility of reflux and medication for life {this is what we have been told from her specialist at home}.

She said that she honestly doubts she even has reflux, from her symptoms and 

tests that they received from Vanderbilt. She even said that being on the medication she is on for as long as she has been could lead to increased infections in the lungs....

Really?

Again, can I just say that we are SOOO thankful to be here. 

We have never been told of the risks of these medicines long term, and we feel so thankful that she was willing to hear our concerns about it. 

She will be doing a part in her exploratory surgery tomorrow and then placing an impedence probe that will stay in 24 hours. There is a very good chance we will have to stay in-patient over night because of this. The probe will show reflux. We are conducting the study off of medication. She said she would be absolutely shocked if she does have reflux, because to her, she has no signs or symptoms of the type of reflux she is being treated for.

Last appointment: Pulmonary / Sleep Specialist

We met with Dr. Baughn who is the primary pulmonologist assigned to Addy's case. She is also a sleep specialist and will be conducting her sleep study Thursday night.

We reviewed everything with her, both sleep and lungs. 

She decided to add a biopsy of the lung tissue to the surgery tomorrow.

She mentioned how interested she was in the results of the sleep study, too. So now we are! Even though we really don't know what they are looking for and how it contributes to her lungs. All we know is, it does. So we are thankful they are running every test they can. 

Overall, today went very well. It was longggg and bless it, Addy was over it. 

It was nothing a little ice cream couldn't cure :) 

 We are anxious and excited for tomorrow.

We have to be at the hospital at 8:15. 

The chest CT is first, which she will be completely sedated for.

After that is completed, she will be moved to the OR. 

They said it should start around 9:30-9:45 and last approximately

 2 hours as far as anesthesia goes.

Please pray for Addy and her doctors tomorrow! We are praying for good results, and also a diagnosis to come on Friday. We are so blessed to have such a great support system while we are here. We will keep you all posted throughout the day on Facebook of her progress, so check there if nothing has been posted here. 

Thanks again for the love and support. 

We love you all!

Laura