Wed 01/07/09 - - Ava Shines! (for the camera)

There were no major happenings through the night which is always a good thing.

In the morning, it was suggested by the resident that they insert another type of feeding tube called a corpak down into Ava's intestines. Like the NG, this tube is fed through the nose. The reasoning behind this is to perform continuous feeds of formula which is better nutritional-wise than the TPN/lipid IV feeds that Ava has been receiving through the NG. She needs to gain weight to continue growing and aide with the recovery process.

After discussing the corpak with the PICU doctor, we consented and the tube was inserted bedside. An x-ray was taken shortly after to verify placement, however, there was some concern that it did not settle exactly how they would like in the intestines.

Around 8:00, Ava was escorted by Teresa and Papa to Nuclear Medicine for the gastric emptying test. Though she tried very hard she didn't do so well with the test. The result was that Ava's stomach was found to empty at a rate of 2% (very, very slow).

While concern started to settle in with the results, we were informed that this sometimes happens to children who go through open heart surgery - - not to mention that Ava went through it twice. It was also noted that this complication is hard to predict prior to surgery, but is treatable. The good news is that everything else appears to be okay, so the prognosis is that her stomach function will return with time.

Following the test, Ava had a photo shoot with "Flashes of Hope" (www.flashesofhope.org). FoH is a non-profit that takes portraits of children that have been faced with life-threatening illnesses. The social worker assigned to Ava at the Cleveland Clinic believed Ava was a great candidate and organized the photo shoot with them.

The shoot involved many pictures of Ava. We dressed her up in her Christmas dress for the very first time (see the pictures to the right). From the test, Ava was very tired and the shoot was carried out while she slept. We can't wait to see how they turned outl because there is no better way to capture a child's innocense than observing them peacefully asleep.

FoH will compile all of the photos and put them on a CD-ROM for us. Our hope is to make them available on this blog as soon as they are received (best guess is March/April).

It was determined that Ava would not have an echo until the 12th because they want to see how the clot will change over a larger time span.

In the evening, the vacuum dressing was replaced with the hydro gel bandage. The surgeon is really pleased with how her wounds are healing which is assuring for us.

Ava was started on a low dose of Pedialyte to help the corpak get through the pyloric sphincter and settle into the intestines.

I spent the night at home by my lonesome while Papa pulled an extra Ava-Watch shift at the hospital with Teresa due to the nasty road conditions.

Besides the issues with feeds and Ava's stomach everything remains status quo - - blood cultures are still negative for MRSA and she remains in good spirits.