A very good day

I walked into Joseph's room tonight and the nurse asked "How are you doing?" My response was "How is Joseph doing?" I explained that if Joseph was doing well then I was doing well. The good news is we are both doing well.

Joseph has less medications, less pacemaker support, less breathing support and his fluid output is excellent. This is all leading to when he can operate entirely on his own. But the big event today takes a little explaining. Let me back up to before his surgery. The doctor met with us to explain the risks and benefits of surgery and what to expect after. One of the things really caught our attention. There was the possibility that he may come out of surgery with his chest still open. WHAT????? I remember thinking-- but I think I said it out loud too. I had heard of this from the NICU but I thought it was only in extreme cases. The surgeon explained that it is very common in infants and it is a normal procedure. But do not worry they said, "there is a plastic cover over the chest so you really can't see it much." There are three main reasons they keep the chest open: 1. to allow the heart to swell and give it room, 2. to allow easy access should there be some bleeding and 3. to allow easy access to keep the heart pumping should his heart have trouble beating. The surgery was done and Joseph did in deed come back with his chest open. However, the plastic cover was what looked like a simple piece of yellow saran wrap across his whole chest. You could see into his chest and it moved with every beat. I waited for everyone to panic because clearly they had made a mistake! The surgery was incomplete. But no one moved. They were as calm as could be. This was a "normal" occurrence in the world of the CT-ICU. It took me awhile to get used to this view. Then I would look away and when I looked back ---there it was again! I had to get used to it all over. It was the most amazing thing I have ever seen. I have a really good picture of it but for obvious reason will not post it here. Jump forward to today. He is doing well and they closed his chest. He looks much better! Here is what he looks like with his new scar. Hopefully it can be a badge of honor for him throughout his life. Sorry if this is a little much to show with all the stuff all over him but all that will be removed over the next few days. There is a handsome young lad under all that and it is so great to see him with his eyes open again!

We somehow got the impression that Joseph would be in the hospital 4 weeks after surgery. We were told today that we could expect to bring him home in 7 to 10 days. His numbers are good and they expect a full recovery. (I think they are getting tired of me making them repeat things like that--but it just sounds so good)

There is a group in the hospital called Spiritual Care Services. The hospital provides them office space and they have their own training program. A minister on staff put this prayer card on Joseph's bed a few days after we arrived a the hospital. It is the Sacred Heart of Mary. It shows Mary with her heart on her chest. Little did we know that Joseph's heart would be exposed as well. It is interesting how a small prayer card can be so comforting as a reminder of the prayers that were surrounding Joseph. The Spiritual Care Services are partially funded by the hospital and partly through a group called the "Spiritual Care Guild." (one of about thirty guilds that support various parts of the hospital) Three years ago we joined that Guild and we are proud to be members. We have seen first hand how important it is to help a family spiritually as well as medically. We are fortunate to have all of you supporting us this way but so many families at Children's Hospital are not that lucky. If anyone is interested in joining this guild please let us know and we will get you the information. It is a fun group and they have fun events. The last one was at the Magic Castle.

It is late so I will close. Once again--Thank you all so much.

God Bless,

Kenny