Today has not been a great day for Hope. She is carrying a large amount of fluid on her right lung. She is working very hard to breathe and has severe in-drawing on her chest with each breath. Hope's colour is very off and her tummy is pretty swollen. The overall consensus from the doctors is that she is simply too "wet" or fluid overloaded. This is a constant battle for us and we appear to lose over and over again.
There are times when Hope's health appears to rapidly decline, and it is all solved by adding more fluid. On other days, like today, she has a lot of problems that stem from being too wet and needing fluid removed.
This afternoon Hope was taken down to the PICU to have fluid removed from her right lung. They used a small needle and inserted it between two of her ribs to take it from the lung. They were able to draw 21 mls out through this process. Unfortunately, they feel that a great deal of fluid was left behind. After the procedure, Hope was brought back up to the ward. I was not happy with how Hope looked today and made sure to be heard by each doctor that came to see her. The STEP team, a transitional team between PICU and the ward, has been involved throughout the day. It helps to have them as they converse with the ICU doctors about the changes in Hope's care.
At 5 pm I told the nurse that Hope's IV was gone. They put one in during her procedure in the OR on Thursday and were working hard to spare this 'extra' line. I have seen Hope lose an IV more times than I can count. As per usual, they did not believe me and insisted that it was fine. I finally convinced them to move her pain med, that would burn her skin if the IV failed, out of the IV. They began running pure saline through the IV and just came to apologize as the line is gone. I'm thankful that her skin was not burned. At least we had a second line for a few days, that was a blessing.
Tonight is my first night sleeping on the ward after a 10 day break. I am thankful for the break, and fearful of how long it will be before this ends. Tonight as Hope was having an X-ray, Shawn and I talked about life in the hall. We're tired of living apart, tired of Hope's constant set backs and desperate to live in our home as a family again. We have so much to praise God for in our lives, but still struggle with our reality. We are blessed to have so many encouraging, praying and supporting us each day.