Posted (Tina) in All Posts on September-29-2008

Ella did not sleep last night.

The Alimentum 20 calorie food went in a bit better and did not give as much tummy trouble, although she had a lot of gas. Each time I fed her, it required multiple times of venting. Also, she still was waking up retching on her own airway secretions throughout the night.

For food, they wanted Ella to try Alimentum 26 calorie since this is the food she ate before surgery. Unfortunately, she did not tolerate it. It gave the same symptoms as the Peptamen Jr – tummy pain and lots of back up including large amounts of bile. I think it is still too dense for her. When we switched back to the Alimentum 20 calorie formula this afternoon, she tolerated it much better.

We have been bolus feeding her 2 times overnight. Tonight, we are going to try and go back to a continuous feed overnight (180ccs for 6 hours; rate of 30ccs per hour). Back at home, she was on a continuous feed overnight before and we are hoping that she will tolerate it since it is only 20 calorie Alimentum. This is what we would like to go back to doing for a home regimen, so we hope it works.

By 6pm tonight, the pulmonology team opted to increase her dosage of the Aldactazide diuretic to the most it can be. We are hoping that it is enough to put Ella in a good place. The next 24 hours will be telling. If not, they will have to look to add the Bumex (a loop diuretic) back into her regimen. Because she has calcium deposits on her kidneys, they are trying to not use Bumex.

There were times that Ella seemed really happy and herself today. Yet, there were other times that she was in pain or simply did not feel well. It was a roller coaster type of day. When the times were good, we tried to take advantage of them.

Kelly the nanny spent the day with us at the hospital. We figured it would be good for Ella to start seeing her on a regular basis and I can start with teaching her about Ella and her care. Most of the time, Ella exhibits stranger anxiety. Today with Kelly, she did not act much different. That was a fun, positive experience for Ella.

Another noteworthy item: I placed Ella’s hair in pony tails today! It was a fun change of pace. Her hair is finally getting long enough and I finally bought some special rubberbands the other day that work great with fine hair. I think she knew that her hair was sassy!

At this point, the doctors are running out of ideas. Please pray for God’s wisdom and guidance in the decisions that need to be made in the coming days.

We really desire for Ella to be discharged from the hospital, but know that He has a plan and that His timing is perfect.