As much as I wanted to go back to Yale to visit all of our friends, I really didn't want to do it this way. Juliana started off with what seemed to be just a slight cold. She was a bit congested for a few days but her lungs sounded clear, her work of breathing hadn't changed and her oxygen requirement remained the same. Sunday morning she her oxygen sats began to dip into the high eighties low nineties so we turned her oxygen up a bit. It was not uncommon for Juli to require a little bit more oxygen with a cold. Well a little bit suddenly turned into a lot more. We were able to keep her saturation levels in the 90's but her oxygen level went from her normal 1/8 of a liter to 2 1/2 liters. Her work of breathing began to increase and she was just irritable. All I could think was RSV and in the hospital for weeks. It's like I have PTSD. The moment I think of going back to the hospital my eyes well up. Despite my aversion to staying in the hospital I knew that if I didn't bring her in things would only get worse.
So we brought her into to the ER and they took several chest x-rays. The first thought after looking at the x-rays was pneumonia but fortunately after a second look it was confirmed that she had a slight collapse in her right lung. A collapse is much easier to get over than pneumonia although still not fun at all. She also was positive for para flu which is a respiratory virus. We spent two nights in the hospital and we were on our way home. She is still sick but we can treat her symptoms at home and it is much more comfortable for the both of us. After this I am sure that we will not be having surgery this month or next month either. Fortunately we can wait
Everyone was surprised to see how great Juliana looked since she was still on TPN. I blame it all on the omegaven. If it weren't for omegaven we would be shopping for a liver right now with a very sick looking yellow little girl. We are so grateful for Children's Hospital Boston and everyone on Juliana's care team. They really go out of their way to look out for her best interest.