By the end of our first appointment with the Neurosurgeon, he and his nurse rightly assumed that we would have plenty of questions later. The Nurse gave us her card, and even wrote on the front what she said was her personal number. She said once we got home, and had a chance to think of some questions we should call her back.

Over that weekend we spent most of our time scouring the internet. Again, the Hydrocephalus Association website was a great resource. We were able to get a lot of questions answered there, but it also brought up just as many new questions. Monday morning, two days pre-surgery, Kayleigh called and left a message asking the Nurse to call us back. We didn’t hear back from her. Hey, it’s Monday, maybe it’s her day off, or she’s very busy. On Tuesday, one day pre-surgery, Kayleigh called again, twice. We still didn’t get a callback.

We decided that most of our questions were things we didn’t really need to have answers to until after the surgery, so we stopped there. We decided this would be their one “get out of jail free”. We will let it go, this time. We then came up with our plan of action for the future. Kayleigh will be the point person when we need information from the neurosurgery team, and I will back her up whenever she needs me. If we have questions in the future, the Nurse will make time to answer them. We will call, we will call again, we will have her paged, and then we will find someone else in the neurosurgery department who does have the time to take a call.

Again, none of the questions we had were earth shattering, but it certainly doesn’t help build trust in the staff that we are working with when they fail to return our calls. We will be partners with the folks who will be caring for Declan’s well-being. We will bring our opinion to the table. We have no problem listening, and we have great respect for the many years that the doctors and nurses have put into being able to handle such delicate tasks, however, we will also be heard.

<Edit: I just wanted to take a moment to add that since this point we have had no problems reaching anyone, or getting answers to our questions. We have come to the conlusion that there may have been a problem with the phone system at this time. When Kayleigh has called back since then the voicemail box answered differently, and the phone tree leading up to the voicemail sounds a little different. There is a possibility that it was…umm…user error, but you can’t prove it! =) Either way, we stilled learned some good lessons from this experience. So, other than some potential problems on the technical side, the staff did nothing wrong on this one.>