I can’t believe it has only been one week since my last post. It seems like so much has happened since. Last week we were so hopeful that Daphne’s chylothorax was ending, but now its back. So many of her chest x-rays looked good at the beginning of the week. Wednesday, however, she had another bad x-ray. Today it was even worst so Daphne had to have another chest tube put in. This was a larger surgically placed chest tube. She didn’t have to go to the OR to get the chest tube; Dr. Dicken did the procedure right in the PICU today. The doctors are hoping that the chest tube will allow the fluid to drain and the lungs to inflate more. Daphne has been doing well though, and although her chylothorax is not gone, her chest isn’t extremely wet. We are still praying that it can go away on its own soon.
Other events of this week include Daphne getting her JP drain removed. This was the drain in her abdomen. She also got her incision sutures removed. This was not a pleasant experience for Daphne since it had been over 5 weeks since her last surgery and her skin had healed quite a bit, but they were all removed and her incision is healing very nicely. Another issue has been her EBV count. It is high again and they are monitoring it closely.
I would have never expected Daphne to be in the PICU 2 months post-transplant. It is definitely discouraging when things don’t go as well as we hope for. But everyone at the PICU has been so good to us it really helps. The nurses and doctors have been so amazing and caring toward Daphne.
I’ll end with a video of Rowan making Daphne laugh.