We are still hanging out in the PICU at Greenville Memorial and will most likely be here for at least another week. Josiah had a pretty bad day yesterday. His lungs have gotten pretty wet in an attempt to rehydrate him from all the diarrhea he was having over the weekend. It's pretty complicated simply because Josiah is very complicated. Josiah was having respiratory distress yesterday and we have had to go up on his settings on the ventilator. His settings are too high for home (we don't have the ability to provide him with enough oxygen at home, it doesn't just come out of the wall like it does here!). So we will stay here until he can be weaned back down on the ventilator. Cultures were also drawn again last night because Josiah had another high fever. The offer was put on the table to go back to MUSC but for right now Milo and I want to stay here. It is easier on our entire family being here. As soon as we feel that Josiah will be better at MUSC we will go there. There is nothing, at this point, that the MD's here can't do that we would be doing at MUSC. The tricky part of that is, the MD's at MUSC know Josiah better, that is the only thing that keeps us wondering if we should go back. The MD's here are truly great they just don't have the 7 month experience of Josiah's ups and downs to start from. They are in constant contact with our MD's at MUSC though, which has helped tremendously.
This is the kind of stuff at MUSC that I when we started talking about the possibility of going home I was concerned about. Josiah has never had even a week straight of good days. This is him, he is complicated. My concern has been are we being realistic to think he is going to be able to stay out of the hospital for any extend period of time. I know that eventually the answer will be yes, but right now the answer might just be no. And none of us have any inclination as to when that time might come. We got out of MUSC because he had 3 good days in a row. We came home and had one great day, then one AWFUL night, then 2 good days, then one bad day that has landed us back in the hospital. Obviously our hope is that the bad days begin getting fewer and farther between.
Please pray specifically that God would make it evident to Milo and I when we need to get back to MUSC. Pray for our girls that they would be comforted by God when we are not with them and while their routine is so uncertain. Pray that God would continue to heal Josiah and specifically for his heart cath that is coming up in 2 weeks. We are praying for the pressures in his lungs to be right so that Josiah can have his next open heart surgery.
- A heart that hold's on
BrianB. Please know you guys are in my prayers. As a matter of fact I'm going into a meeting right now and will lay your family before the Master. Keep your tweets coming and I'll keep trying to Re-Tweet them for prayer.