November 12, 2009

Things have been going good for Gabrielle. She is still content here in the hospital. She is eating, sleeping, watching TV and playing. To keep things interesting for her we are bringing her a new toy to play with everyday. She has a foam mat on the floor so she can be in the floor to crawl and play. She also has a walker so she can roam around the rest of the room.

She has gotten use to most of her therapies and allows them to be done without much fuss. We are still trying to find something that will keep her attention for the entire 20-30 minutes during her respiratory therapy. We have things that keep her attention for 10-15 minutes after that she gets a little restless, but we are still able to complete the therapy it is just a little bit more challenging.

We have now been able to talk with all of the doctors and have also gotten all the lab results back. No new bacteria grew in the cultures and the bacteria the doctors are concerned about did not grow, so the Pulmonary doctors are changing her treatment from 14 days to 7 days. This means we are being discharged from the hospital tomorrow (11/13) without having to continue the antibiotics at home.

The GI doctor came and talked with us earlier this week. The biopsies showed inflammation in the tissues in her esophagus from acid reflux. The doctor mentioned increasing her reflux medicine. He also wants to run an impedance study at a later time. When this test is run Gabrielle will have to stop all her medicines and he does not want to do that to her at this time.

An impedance study is done to help evaluate acid and non-acid gastroesophageal reflux. In this test, a thin, flexible tube is passed through the nose, down the back of the throat, and into the esophagus. The tube is carefully taped into place on your child's cheek. The end of the tube is attached to computer which will remain at your child's bedside throughout the study. An Impedance Study takes 18 to 24 hours.

One issue that has developed over the last few weeks is that Gabrielle has lost interest in her formula. This is causing her to only take 10-12 ounces of formula per day, this includes the 2.5 ounces that is mixed in her rice cereal each day. The issue is hydration and calories. To try and fix this while in the hospital we are mixing her formula with a vanilla flavored supplement, Nutren Junior. This will be the supplement that she goes on when she stops taking her formula. She seems to like the taste better. When we get home we are going to try adding Vanilla Extract to her formula to see if that works. If it works then we will continue to stay on her formula, if it does not work we will change to the supplement.

There have been changes made to her home maintenance treatments but all the changes are manageable. Once we receive final instructions from the CF Care team about our new home treatments we will post another update

Thank you for all your prayers during this time. Gabrielle has done a great job being hospitalize and Ashley and I have been able to see what all is involved in the hospital treatments.

We are going home Friday!!!!!!!!!!!!!!!!!!!!!!!


Jeff, Ashley, and Gabrielle