That gut instinct.

Be warned- this is a venting post lol.
All mums with children with spina bifida, or mum's who have children for that matter, have more than likely been told to listen to that gut instinct.  That instinct when  Mum just know's there's something wrong with their child, even when she's told there isn't.  You know your child best, is what they tell me - and I know that's true.  I know when she's not her usual self.  So, right now, i'm very confused as to what to do because I'm not feeling that gut instinct - because she is acting normally, but something might be wrong.

As you all know, Caitlin has recurrent shunt malfunction's.  She's on number four now.  On Thursday I was doing my daily check of her fonatelle (the soft spot on the top of her head), which should be soft and sunken.  Yep, it's soft.  But it's not sunken.  Alarms bells ring in my head.  Caitlin is otherwise absolutely fine.  What do I do?  Most would probably say get down the hospital and get her checked out.  That would make sense only she's fine (except for the fonatelle).  She's not presenting any other symptoms.  If I bring her to hospital she is immediately made to fast.  No food, no drink = one very hungry, grumpy baby.  Then we wait and wait for the neurosurgeon to come round.  Caitlin usually misses at least one nap while she waits which = one very hungry, grumpy and tried baby.  Then comes the blood test.  This, as I've said before absolutely traumatizes Caitlin, she ends up in tears, I end up in tears.  Next up is the scans - by this stage Caitlin is clinging to me crying and trying to lie her onto a bed and get her to sit perfectly still while the ct machine whirs around her is nearly impossible.  The x-rays are a similar situation.  Then we wait again and usually my poor exhausted hungry child will eventually drift off and that will be the moment the neurosurgeon will finally walk in and announce he needs to wake her.  This upsets Caitlin even more.  Then the neurosurgeon will decide what he wants to do.  This has happened 7 times in the last 14months.  4 time's her shunt has indeed blocked and she's needed surgery, the other 3, we've been sent home to observe her.  All 7 times that fonatelle has been up.  They don't know why it does it when the shunt hasn't blocked.  Once, we were sent home and her soft spot stayed risen and hard for a month.  No other symptoms.  Then it just went back to normal.  The problem is when it is blocked - she doesn't get sick or show any other symptoms either.

So it's really down to me to decide.  But I don't like having to make that call, because I honestly just don't know what to do for the best.  I don't know what my gut instinct is telling me to do.  I keep changing my mind.  On Friday, I was so worried I took her to the hospital, and we were sent home to observe her.  I said I would be happy to take her home without doing the scans if they were happy with her and they were.  She has been her normal, happy self the whole time it's been up, except when I took her to hospital and she had to fast and be examined - she was crying her eyes out because she hates it.  Then I feel so guilty for deciding to take her down, only to be sent home.    I think, if it's not causing her any problems - then maybe I should not worry and not take her to hospital?  Or maybe I should bring her down for scans to check  even though they were happy with her on Friday?  She burst into tears on Saturday and I had half of my family looking at me, waiting on me to decide why she was crying, but she was crying while pulling her ears, and dribbling like crazy and she has 2 teeth coming through.  Or it could be the hydrocephalus.  I wish there was some way of knowing for sure what was going on!