May 5, 2010

Gabrielle was able to come home from the hospital yesterday evening. She had to stay for one last dose of antibiotic and the earliest they could give it to her was 3:01pm yesterday. She has not had to take any pain medication for about a week now and her incision from the Nissen is healing nicely and does not seem like it will leave a scar. Her G-Tube is doing good also. We are still learning how to feed her without over filling her, but almost have that figured out.

Because of the flooding we were not able to get the feeding pump and supplies to feed her continuously at night time. They were suppose to ship everything overnight yesterday but we only received the feeding pump today. The home healthcare said they can get in there office tomorrow to get us the formula and supplies. If everything works out we will be able to start the continuous night feeds Thursday night.

Gabrielle stopped taking the formula with her sippy cup while we were in the hospital so all her feedings were given through her G-Tube. Even by doing this she gain a little over 1 pound which put her back in the 25 percentile while in the hospital. Today we used a different brand of sippy cup and she would take about 2 oz of her formula with the sippy cup at each feeding so we only had to give her the other 2 oz through the G-Tube.

The feeding goals we have for the next 2 weeks are: 3 – 4oz formula feedings during the day, 1 jar of stage 1 baby food (single ingredient), 1.5oz formula per hour for 8 hours during the night. Whatever formula she does not take by sippy cup during the day has to be given to her through the G-Tube.

Her daily medications now include:
Viokase enzymes (mixed in formula)
Ultrase enzymes (reintroducing)
Zantac (2x daily)
Prevacid (2x daily)
Aquadeks Vitamins (1x daily)
Pulmozyme (1x daily)
Albuteral (as needed)

Gabrielle is still on an antibiotic for the C. Diff (4x daily) and Flonase (2x daily) for a cold/allergies. She also has 10 minutes of chest percussions for airway clearance (3x daily).

Over the next few weeks we have 5 doctors appointments already scheduled. We start with a feeding evaluation that will help us to teach Gabrielle to eat again. Then Gabrielle has her 15 month check-up, a visit the CF Clinic and GI Doctor. Toward the end of the month Gabrielle will visit the surgeon where her current G-Tube will be replaced with a Mic-key button.

On May 15th, Gabrielle along with Ashley and I and her Grandparents will be participating in the Great Strides Walk at the Nashville Zoo. GREAT STRIDES is the Cystic Fibrosis (CF) Foundation's largest and most successful national fundraising event. We would like to invite you to walk with us and/or donate to the CF Foundation.

Jeff’s Great Strides Donation Link - http://www.cff.org/Great_Strides/JeffreyShaver
Ashley’s Great Strides Donation Link - http://www.cff.org/great_strides/AshleyShaver6704

Thanks for pray for Gabrielle and us!!!

In Christ,

Jeff, Ashley, and Gabrielle