Posted (Tina) in All Posts on January-2-2008

Ella was a tired girl today.

It was my last day off before returning to work after the holiday break. So, I was looking forward to spending time with my girl. Unfortunately, she was simply tired and needed more beauty sleep.

She was probably awake for a total of 30 minutes during the day. I even drove back to the hospital and tried to catch more awake time (apparently she was awake between 7pm – 8pm), but by the time I arrived, she was snoozing again.

Nurse Linda who is taking care of her tonight thinks that she is still catching up on her sleep from the prior days where she was running a fever and not sleeping well. Either way, she is still cute as ever!

The only change today was the discontinuation of her antibiotics (since the CBC and blood culture test came back negative). The plan is to have her go for her CT scan tomorrow. She is scheduled to have a nurse that she has never met before. That does not sound like a good combination, so we will pray that all this sleep provides for a pleasant and more tolerable Ella Bun for tomorrow.

Again, the main issue is switching her diuretics from IV to administering it via her g-tube. Also, each day the central line is getting tougher to flush. We hope that it will last as long as we need it to, but there is concern that its last days are around the corner. Unless we come up with another plan for Ella and her diuretics, this might be a problem.

Also, we want to try to switch Ella to breast milk and then a different type of formula to give her better nutrients. However, we need to make sure that the change over does not cause any fluid build up.

Once complete, we are anxious to hear the results of the CT scan. While doing the scan, Dr. Kays will look at the SVC to see if it is still collapsed. Also, he will take a look around her pleural cavity to see if there is fluid accumulation or what might be occurring to prevent her lungs from getting stronger. Finally, he is going to check the central line, to ensure that it is still functioning and can remain in place for a longer period of use.

As of Tuesday morning, Dr. Kays wanted to make sure she had a couple of solid days before he started changing any variables. It will be interesting to hear his perspective on what we should tackle next.

Please pray specifically for his wisdom and discernment. Ella has proven to be quite the challenge and not textbook in her recovery.

Considering all she has been through as well as her age, we want to choose the right path for her, so we can get her home. We think that being at home with consistent care and a better environment will help Ella recover quicker.

Thanks for all the thoughts and prayers. We look forward to what the Lord has in store for 2008.