Two Steps Forward One Step Back

The good news is they were able to remove all the tubes that assist him with his breathing. He is fully breathing on his own. However, Sunday was not Joseph's best day. Just when he was making great progress he went backwards. It was very frustrating. The heart medications are mixing up his system and making it hard to find a balance for his electrolytes. Joseph began having "emesis." That is the fancy medical term for barfing. He has to work hard to eat and then all that energy is wasted in a few seconds time. They put an oral feeding tube back in and are feeding him slowly through that. So, he lost one tube and gained another.

They worked all day with him to get him balanced. He lost weight and looks more frail. We are going to have to get used to this. His heart medication keeps his fluid levels down to make it easier for his heart to pump. As we understand it, he may be getting stronger but looking weaker. We still do not know when he will have heart surgery. Please keep the prayers up for him. He really needs strength and a fighting spirit. This leads to the picture of the day. When Joseph first got into Children's he was visited by two wonderful Carmelite Sisters. The Carmelite order has been praying for him since before he was born. Saint Joseph is the "protector" of the Carmelites so there is a strong connection. On the left is Sister Mary Joseph and on the right is Sister Madonna Joseph. So there are three Josephs in this photo. With friends like that we are sustained on the bad days and look forward to better days ahead.
With gratitude,
Kenny