This is an expansion of the CarePAge post with the extra details in case you want them.
For the past few months, Sam has been a little "off"- nothing dramatic, and nothing that couldn't be attributed to being a 2 year old, save some vomitting, that could be attributed to her reflux. We changed the reflux meds which seemed to help for a little while, but then she was puking again. So our pediatrician recommended that we get a CT scan. We spent an agonizing week about whether we thought it was worth exposing her to radiation when it didn't seem like a typical shunt failure. Finally I decided that I wanted to do it. Fraser was less sure, which made it hard to decide, but the nurse told me if I was that on the fence about it, I should do it.
Anyway, we did the scan and it revealed that her shunt was malfunctioning. Her neurosurgeon was out of town until monday (We got the scan n Thurs) and since it wasn't an emergency, we decided to wait until we could consult with him on what to do, so that someone who knew her would be doing the surgery.
So we went to see the surgeon today. He told us that we definitely need to do a shunt revision (that means surgery) but it wasn't clear what the surgery should be. You seee, Sam really has 2 different shunts in her head, that are joined at the neck. BOTH of them were malfunctioning, however, only one of them seemed to cause a problem. That means that the other one is probably no longer necessary. That is kind of good news. But he wasn't sure what to do...revise (meaning replace) both shunts, or just the one that is causing problems. To me, it seems like we should only do the one that is causing problems, since it is brain surgery, but what do I know? He wants us to get a second opinion first.
So we are going to get teh opinion of her original neurosurgeon who placed the shunt to begin with. He has moved to CT (Hartford), but he comes to MA periodically to Shriner's to do surgeries and see patients. So we are going to try to see him there where our insurance will cover 100% but if we have to go to CT we will, and pay 20%. He is an amazing Dr.
The catch is that our surgeon is going out of the country soon, so he might not be able to do it, and the other Dr. might not be able to do it in a timely fashion, so things are up in the air right now. We want this resolved ASAP so she can start feeling better and we can all start getting some sleep.
To make matters worse, mommy has started on her way to an ulcer...ugh. It is just gastritis at this point, but man it hurts like the devil. So now Mom and Sam are on the same medicine for acid reduction...too funny. Hopefully we can nip this in the bud, too!
Well, that is our eventful start to July. Stay tuned for further details.
Lisa
