Video Swallow Study (VSS)

What is a video swallow study?
A video swallow study uses X-rays to take pictures of your child's throat while he / she is eating and drinking. It lets the doctor and therapist take a careful look at how your child swallows.

Before the test
Before you come to the hospital, explain to your child what will happen. For young children, use simple words and explain what will happen, only shortly before the test.
Your child may not eat or drink anything for 4 hours before the test, including gum, mints or candy. If your child receives tube feedings, they should be stopped 4 hours prior to the test.
Remember to bring your child's eating utensils and favorite food / beverage choices. Please bring a food or drink your child has trouble swallowing.

During the test

Your child will be put into a special chair that will adjust to a similar position he / she normally eats or drinks in at home (i.e., sitting, lying). Your child's food will be mixed with a strawberry or fruit-flavored liquid called barium. It is necessary to mix the barium with the food or liquid so that it will highlight your child's throat on the X-rays.
A parent or family member may be asked to feed your child the barium-prepared items so that your child is more comfortable during the test. A therapist will be there during the test. The therapist may ask your child to change position or to try different textured foods / liquids to help find the safest and best way for your child to eat.
This test does not hurt, but your child may dislike the taste of the food or liquid. You are encouraged to stay with your child during the test. Children are often more cooperative and less apprehensive when a loved one is with them. If you are pregnant, you will have to leave the room during the pictures. It is helpful to have another caregiver watch the child's siblings so you can be with your child.
The test usually takes about 30-45 minutes.
It is possible that during the procedure your child may experience some discomfort. Please tell the doctor, nurse or technologist if pain occurs so it can be evaluated.

After the test
When all the X-ray pictures are taken, the radiologist and the therapist may review the tape with you, if time allows. The technologist or therapist will tell you when you may leave. Your child may return to normal daily activities. A written report of the results will be available to your child's doctor within 24 hours. He / she will contact you about the results.
It is possible that your child's stool may appear to be whitish in color for 24-48 hours after the test due to the barium that he / she has swallowed. Whitish stool is not cause for concern. Encouraging your child to drink fluids will allow his / her stool to return to normal within a short time.

Quick Update

Drew has been slowing down on her eatings during the past few days. She is having a "swallowing study" perfomed today to see if she has problems swallowing or reflux issues.

Drew was able to eat!

Drew ate 25 cc's on her first try yesterday... She ate 65 cc's today. She is slowly working her way up...

Coming Home Soon!

We are back in New Orleans at Childrens Hospital, Drew is doing great.

We met with the surgeons and cardiologists this morning and they are all in agreement with Drew's future plans. They want to get her off antiboditics immediatly and take another blood culture in a few days. They would like to wait to perform surgery to close her VSD in a couple months allowing her to get bigger and stronger.

They are not concerned at all about the clot in her heart. It is attatched well to the wall of her heart, they feel there is a small chance that it would dislodge.

We are meeting with a Occupational Theraopist tomorrow to try to get Drew to start feeding.

Once her blood cultures come back negative for infection and she re-learns how to feed, we will be coming home.

Thank you for all your prayers and support...
Please pray Drew starts to feed without any complications..

Back to New Orleans

Drew is being transported back to New Orleans tomorrow.
She will be at Children's Hospital in New Orleans, close to the zoo. We will be doing a consult with Dr. Bob before anything is set in stone. He was Drew's doctor at Tulane. He is going to consult with the surgeon and see if Drew can go through another surgery.
The clot in her heart is still there and the docotr here wants it removed. There is a bit of arguement as to wether or not the clot needs to be removed. The VSD is still in a tricky spot and Dr. Bob does not want the surgery to be done on the clot if the can't do the VSD surgery. So either both surgery's will be done or none at all.
Steve and I will be staying at the hospital in an empty hospital room being there are no hotels readily available.
Please keep us in your prayers.
We will update when we can. I am not sure if we will be able to get internet access.

Video of Rylie and Drew

Just click below

Video of Rylie & Drew

nothing

No new updates as of yet. They are supossed to do an ecocardiogram (ultrasound) today on her heart to see if the clot has changed.
I will update later when we get the results.

pictures!

I have come to the realization that I may never get a good picture with 2 kids. Someone is always moving.

Getting bigger

Drew now weighs 9 pounds 10 ounces!!!
She is starting to coo more and smile lots. She is sooooo adorable! She is such a happy baby.
Hopefully this week the doctor says that we can start trying to feed her out of a bottle. Her respiratory rate has gone down considerably. It used to be in the 80's and it is now in the 50's and even in the 40's and 30's at times.
So please pray the dcotor gives the go ahead on her feedings.

SAD :(

I don't even know where to start.
The doctor came and told us Monday that Drew was going to be coming home Thursday. This is exciting news right????
Well I slept there Monday night and learned how to use all of her equipment and how to give her meds and all. The doctor comes back yesterday and says that there has been a change of plans. He talked to the Infectious Disease doctor and she said Drew needs to have surgery to have the clot in her heart removed. Which was a big shock to us b/c the cardiologist never seemed worried about it, but that is a whole other story. So…. her doctor said they are not going to do an open heart surgery just for that that they might as well repair her hole in her heart too. I am okay with that, what I am not okay with is he wants to send us back to New Orleans. I do NOT want to go back there at all. We would be going to Children’s hospital which was not affected by the hurricane but still. He said they will have Children’s setup to do pediatric surgery in a few weeks. I can’t send my baby girl there. We are going to talk to the doctor about it and express how we feel and see if we can go somewhere else. He wants us to go to NO because that is where this “great” surgeon will be.
We will be camping out at women’s for the next month and then off to surgery and staying at that hospital for recovery for another month after that.
Could you all pray that this clot just dissolves so Drew doesn’t have to go through all of this.
The surgery for the whole in her heart can wait for a while as long as that clot dissolves.

Picture Overload

Drew's haircut

I finally am getting a chance to show off some pictures. I cut Drew's hair 2 weeks ago. The buzz cut the ER gave her was driving me nuts. I just cut off the rooster thingy she had going on on the top of her head. LOL!

Before:


After:

Almost there

Drew is almost 9 pounds. The nurse weighed her last night and she is now 8 pounds 15 ounces. The doc predicted that at 9 pounds the PA band should start working much better. Let's hope and pray that is true. Her respiratory rate is getting better little by little.
She is getting better with her days and nights. She stays awake for most of the day with short naps in between and goes to bed at around midnight. She is such a sweetheart. And she knows exactly what she wants. She has to have someone in the room with her at all times. I could be sitting in the room where she can not see me and right after I walk out she starts crying. She does it to the nurses too. LOL She is also now addicted to her mobile, she stares it down till we turn it on.
Thank you for continuing to pray for our baby girl. We love you all!