Faith's Place

Wednesday, March 11
Well, things are seeming to fall into place and become more definite. Faith will be getting her G-J tube on Saturday. She has to be NPO for that, but hopefully re-starting feeds after that will go smoothly, and we will go to that place that starts with an "H" soon after that. From there, we will most likely go on to Boston on our own.
Our case manager came in this morning to tell me that Boston Children's is a non-network provider for our insurance. They also are refusing to cover anything for Faith until she is discharged from the hospital. SO, what that means is that if we did a hospital-to-hospital transfer, the insurance won't cover the transport, or the initial inpatient stay in Boston. (The transport alone would be $26,000!) That's the bad news.
The good news is, they seem to really want to send us home from here anyway, and then we'll be able to fly commercial to Boston. We have pretty good insurance, and they'll pay once Faith is discharged, so even non-network, we can make it work and just pay the out-of-pocket costs. I was never very worried about the healthcare costs associated with the Boston trip... it's the rest of it- eating, living, getting around- that's going to be a drain on us financially. We are very blessed to have this insurance available to us now.
There seems to be an interesting power struggle going on with Faith's doctors right now (well, for the past week really). Surgery has followed us and been her primary doctors the whole time we've been here. But pretty much since Dr. Sandoval switched to his urology rotation, I haven't seen a surgeon. The last time a surgeon talked to me was when we had our conference with Dr. Partrick. And neonatology has gotten more involved, with Dr. Kinsella making decisions and writing orders about Faith's feeds. So last night around midnight, when I posted last, he bumped her feeds to 17 mL/hr. This morning, Dr. Potter bumped her feeds to 18 mL/hr. Of course she threw up and was just generally unhappy and uncomfortable, since anyone who really knows anything about her knows that it's NOT smart to increase her twice in 12 hours... So Kinsella said to back her down and hold her at 17 mL/hr. So Dr. Potter must have seen that, and he wrote another order to bump her back to 18 mL/hr, and then increase to 19/hr tomorrow and 20/hr the day after that.
So Donna the NNP came in and asked if I thought she'd be ok increasing like that, and explained that they couldn't hold her at 17 if surgery wrote to increase to 18... so I asked whether we could hold her at 17 if I said no to increasing her, since realistically they can't do much of anything without me agreeing it's ok. I told her that Faith was really uncomfortable and threw up this morning when she was at 18, and I don't see a point in making her uncomfortable when we're planning to go to Boston anyway and if she's going to get pushed to take more, it'll happen then. So she called surgery to talk to Dr. Partrick; he and Potter were in the OR together, so she was able to confirm with both of them that we're holding Faith at 17 mL/hr.
All I can do is hope that we get out of here soon, and that the doctors in Boston have slightly better communication skills than they do here... Still no more definitive word from them...