Frustration

The weather needs to break soon. I am officially in a FUNK and I need some sunshine!!!! Yesterday was a horrible day. Lots of frustration and tears. I have come to the realization that our wonderful peds practice is just not capable of managing Gabe's care. I will be calling around today to start interviewing new peds. I NEED a ped that can manage day to day care of a shunt. One that can tell me, "Based on my assessment, this sounds broken" or "Based on my assessment it is fine" or "I think that we need a shunt x-ray". Unfortunately if we call after hours and Dr. V is on call before I can even get out "Hi. This is Michelle H.... I am calling about Gabe..." Before I can get the entire word out she says (in her broken Brazilian accent) "You need to just call UCH NS". Ummm but I had a question about his asthma??? Our peds, Dr A and Dr B are no better. I guess he is just too much of a liability. *SIGH* They are not on the same page as us. For example.

5 days post op Shunt revision, Gabe starts running a fever. Lungs clear, ears clear, throat within normal limits, ect. I called to get an appt to have Gabe checked before I would have to take him to UCH. His incisions had a dressing over top of them and steri-strips glued into place. I really wanted him checked over to Rule out incision infection and if it was a viral infection. I am not driving 1.5 hours to be told in UCH ER that it is just a virus and WHY did I come all this way before stopping at the peds to have them rule out that it was a virus? Dr B made me call the NP at UCH. The NP was like, they need to see him to rule out that he has an infection somewhere else. UGH! But the Dr would not see him because it could be a shunt infection. ARGH!!!!

I spend a lot of time beating my head on the wall.

Frim called last night and our choices of trying to make Gabe feel better for now...
1) Have him sleep on a wedge. When you lie flat your ICP goes up. This shunt valve that he has does not drain as much when he lies down. So our solution is to having him sleep propped up and see if that helps with his CSF drainage issue.

or

2) Leave his shunt setting where it is at and buy an abdominal binder and use it when he has low pressure. The abdominal binder will put pressure (resistance) on his shunt tubing and cause less drainage of CSF.

or

3) Set his shunt at 1 level during the day and reset him at night at a different level. Though this will eventually wear out the valve in his shunt and will break it.

We will still see them at the end of this month.

I think Frustration would be the name of the game.