I Hate Craniosynostosis

It's been a while since I've had to write a big vent about craniosynostosis.  That's because I've started losing track of how far post-op we are, have stopped visiting the CranioKids bulliten board so often, and just in general have tried to put the whole ugly ordeal behind us so we could get on with our lives.   For the most part, Max's head shape looks ok, and until this past week, we were pretty certain that all the worries were behind us.  We haven't even been to the ER, hospital or urgent care for Max in three months.  I think that's an all time record!

And before I go on, my apologies to all the other cranio moms that follow our journey, especially those that are facing a new diagnosis.  No, I don't know why we are facing so many complications on this crazy journey.  No, all of these problems are not routine.  In fact, no, I don't know anyone who has gone through such a bumpy ride.  But we don't really have a choice.  So, my cranio sisters, read on if you dare, and just thank your lucky stars that your journey will be smoother.

The other night, Max was feeling very cuddly, and spent a hour laying next to me while we both read stories.  I was playing with his hair and rubbling his head when I felt it.  A fluid pocket about the size of a quarter on his scalp.  I did as any mom whose son had had two major surgeries in the past year would and panicked.  I called my husband upstairs, and he could feel it too.  There is nothing that can be remotely good, or even neutral, about a pocket of fluid hanging out on my little boy's skull.  At best, it's fluid from the dissolving plates and screws; at worst, it's cerebral spinal fluid collecting from a leak in his brain!

The next morning, I called our surgeon's office, and the nurse didn't even consult with the surgeon- she told us we needed to come in the next day.  Now, we've been trying to talk with our surgeon via email about Max's protruding screws on his forehead and have had no luck for two weeks.  But apparently, all I need to say to get an emergency appointment is "fluid pocket" and I had an appointment the very next day.

So I called a friend to ask if she could help watch my girls, (since taking them to Dr appointments actually ranks even higher than grocery shopping on the "things I would rather scratch my eyes out than do with all three kids" scale,) and I got about two words out before I started sobbing.  Pregnancy hormones combined with a healthy dose of fear had me imagining emergency surgery before the weekend was out.

I probably pressed the panic button too soon, but I couldn't help it.  We've had what seems like every imaginable complication, including two major surgeries.  I forced myself to keep stuffing a bitter sense of dread down my throat while we waited for the appointment.

We went to see the surgeon Friday afternoon, and he was remarkably unfazed.  The fluid pocket seemed to have decreased significantly, and the doctor told us is could very well have resulted from a bump to the head, and if it wasn't causing him any discomfort, there really wasn't anything to worry about.  He also reassured us about the screws protruding from his forehead, telling us that when they went in for the second surgery, they found that Max's bones were on the thin side, and that forced them to place screws where they don't usually.  He actually seemed a bit more worried when we told him that Max had resumed banging his head on things this week and had been unusually cranky.  (Well, unusually cranky is how we described it to the doctor.  "Possessed by the demons of Hell" is how we've been affectionately referring to it at home this week.)

So, when all was said and done, we left the office with the reassurance that things were most likely okay, but with an order for a 3D CT scan just to be on the safe side.  Max's persistent head banging stopped abruptly after his second surgery, and just reppeared this week, and that combined with his behavior this week can point to increased intercranial pressure.  So we're going to get things checked out just to be safe.  And I'm trying not to press the panic button.

Problem is, getting a 3D CT scan is an ordeal in and of itself.  But, we've had miracles in that department before, and I'm not doubting that we can receive help in that department again.  And if there's something that needs to be dealt with after the scan, we'll have to take that as it comes.

In the meantime, I'm wishing that I had never heard the word craniosynostosis.