The major accomplishment of this week is getting Daphne off of the ventilator! This happened on Boxing Day (the 26th). It also happened to be Daphne’s 9 month birthday. What a birthday present! It has been great that Daphne has taken this step forward.
There have been some complications though. Daphne has been breathing on her own, but she has been working very hard to do so at times. Chest x-rays have shown a lot of fluid around the lungs. They decided to put a chest tube in to drain out the fluid. A test of the fluid showed something called chylothorax. It means that at some point a lymph node has been nicked causing lymphatic fluids to leak. To stop this, Daphne’s diet has been changed to a special formula with medium chain triglycerides instead of long chain triglycerides. This should reduce the leaking and give her a chance to heal.
This week Daphne’s WBC also went up again. She had a fever and has had diarrhea. They have put her back on more antibiotics again and she had another CT scan. The CT scan didn’t show any problems. She is also dealing with withdrawal symptoms, which could also explain a lot of her problems this week. It has been great to hold Daphne more easily and not see that huge tube in her nose, but seeing her work to breathe, and hearing her sad little cry is hard too. But overall, we are making steps forward which is great! She has come a long way.