Being (a) Patient

Young Caleb was born on August 2, 2011.  This was a wonderful experience in many ways, but not least of which was because I got to deliver him.  Not many people get to do this in their life, and I really enjoyed it.  However, the first thing I noticed about Caleb (aside from all the gross fluid and general gunk on newborns) was that his forehead was funny looking.  I believe my exact words to my faculty was, "He looks like a Klingon".  She did not approve.  In any case we waited a couple months to see if it would improve.  He was developing beautifully and meeting all of his milestones, but his forehead didn't get any better.  At our 4 month well-child visit we talked with our doctor and started to see what we needed to do.  Luckily there was a Pediatric Neurologist who would be coming out to La Crosse for his monthly visit the following week so we pulled a couple of strings and got in to see him the following week.  He diagnosed him with Metopic Craniosynostosis (the two bones on either side of the forehead fused in the middle sooner than they should have) and referred us to a Pediatric Neurosurgeon in Rochester, an hour and a half away.  This was also expedited because we were coming to the end of the year and our deductible had already been met for Caleb.  The Neurosurgeon also diagnosed us with Metopic Craniosynostosis and then we talked about surgical options
1) We could get an endoscopic surgery in the next month or so.  It would be a small incision on top of his head, they would surgically separate the bones of his forehead and he would have a quick recovery.  The only downside is that he would have to wear a helmet 23hrs a day for a year while the bones remodeled and grew back in.  These helmets would have to be replaced every 3 months at about $3000 per helmet and we would likely have numerous visits for fittings and the like.  Plus they end up stinking like crazy as you can imagine from being worn all the time.
2) We could go with the standard open surgery.  This is a more involved surgery but the outcomes are comparable.  It would be a one-and-done surgery.  This would also be costly and we would meet our deductible (so for us the cost would be the same).  For this one we would have to wait for him to be 9 months old so the bones are hard enough to change shape, but not so hard that they are like adult bones.  He would have to stay in the hospital a couple days longer with this one due to the surgery.
We opted to go with the second option as the results were the same and taking a bunch of trips up to Rochester all the time, dealing with a 1-year old in a stinky helmet for a year didn't sound great.  Let's be honest, neither of these options sounded great (who wants a head surgery for their little boy), but there you have it.
People have asked what would happen if he didn't get this surgery.  Bones grow out from suture lines.  Without a suture line (as it already fused) the bones of his face wouldn't separate from each other.  His forehead is already really pointy and would continue to get worse.  His eyes are already a little closer than they should be and this would also get worse as the rest of his head continues to grow.  Basically he would look really funny for the rest of his life.  The other medical complication is that he can have decreased room for his brain to grow and increased pressure inside his skull.  (this is why insurance will pay for it)

So our journey continued.

After our discussion with the Neurosurgeon he wanted to have us back for a visit within the month for some tests.  These included a CT scan to make sure there weren't any other sutures that were fused (and the last thing surgeons [or parents] want is a surprise when they're doing surgery on someone's head), a laser scan to see the outside contour of his head, a visit with the neurosurgeon again and a visit with the plastic surgeon.  The neurosurgeon is the one who opens up his head and removes the bones, the plastic surgeon is the one who reshapes the bones and makes them look like they are supposed to, which is the whole point.  The day went fine for the CT scan, and we really enjoyed talking with the plastic surgeon, but the other two events lacked a little something.  The laser scan for his external head shape is apparently for a study the neurosurgeon wants to do.  Of course, we have to pay for that anyway.  She also talked with us for 20 minutes about different helmets and things even though we had already decided to not do the helmet thing.  Whatever.  Caleb is tired and we're ready to meet with the neurosurgeon (who is late).  He breezes on in and proceeds to have a nearly identical conversation with us as he did a month ago.  It was painfully obvious that he had totally forgotten who we were or why we were there.  After we told him that we already knew the diagnosis he looked at us and asked us why we had come back to see him.  Really?!  Because you freakin' told us to!
One funny thing did happen this day that is somewhat redeeming of the experience.  Caleb is fine for most of the morning and does the tests fine.  We are then waiting for the plastic surgeon and Caleb starts getting fussy.  We look him over and discover a nice mess in his diaper that has leaked onto his pants.  We were just about to lay him down to change him when...of course...the plastic surgeon with his two nurses comes strolling in.  We explain the situation and they were very understanding and just told us to change him while we chatted.  I get his diaper off and start cleaning him off when he starts pooping again.  A lot.  I'm discretely trying to cover his butt with the diaper so it doesn't get all over their linen hamper (which is made of wood and a nice size for changing diapers) and trying to not appear panicked that it might cause a huge poop mess all over the room.  "Uh huh, that is interesting (oh geez, not on the wood hamper).  Yes, I understand what you are describing to me about the surgery (please don't notice how much is coming out and what a mess he's making).  Nope, we don't have any questions at this time.  (Gaaaah, it won't stop coming)".  For a brief moment there I really started to panic as it looked like the poop was coming too fast for the diaper and wipes to hold out against it's onslaught.  Thankfully we had enough wipes...just barely.  We finished with one lone wipe left over.  After the doctors and nurses left I went out to the front desk to ask for some plastic bags to handle the casualties from this battlezone and they hand me a ziplock baggie.  "Um, yeah.  [nervous chuckle] I'm going to need a much bigger bag...or two".
So a couple of months have come and gone and we're a mere 3 1/2 weeks from our surgery date when we get a call from the plastic surgeon's nurse.  Apparently the neurosurgeon thought his schedule was blocked out on the date of Caleb's surgery, but the computer showed it as open, and his nurse had scheduled in our surgery, and now we're going to have to reschedule.  WHAT?!  So I got on the phone and called this guy and basically said, this is a big deal, you need to find another neurosurgeon who can do this for us.  I don't have another time that I can take vacation for this and my mother has already bought her ticket from Utah.  After a long weekend of sweating it out, they called us back and had indeed found another surgeon to do his portion.
The week of the surgery, Melinda had to make a trip up to Rochester on Monday for a meeting with the doctor and to sign a bunch of paperwork.  We both came up on Tuesday to meet with the new surgeon.  Then we had to get up here at 6:15AM, Wednesday morning, to register and check-in for his surgery.  Seven hours later we're sitting here waiting for the surgery to finish in a couple more hours, but so far all is going well.

Some things I've learned on my journey as a patient-proxy.  It's is confusing and often not explained very well what you have to do and when.  We needed a referral to be sent from our primary care doctor to the insurance for the initial Neurologist visit because his visit wasn't going to be covered without one.  His subsequent referral to the neurosurgeon also wasn't covered including the CT scan and laser scan.  After some terse words with our insurance we finally got it figured out, but it was ridiculous.  I also thought the first neurosurgeon was a total jerk.  He wasn't very helpful and although I understand better than most how easy it is to run behind schedule, you could at least apologize for being late.  Plus not even remembering why we were there when you told us to come back for a visit...weak sauce.  I also learned that it's a mixed blessing knowing as much as I do about medicine and surgery.  I know that most surgeries go well especially in healthy individuals without a lot of other diseases or stuff going on.  But I also know what goes on in a surgery and where things can go wrong.  Overall I'd rather have the knowledge than not, but it is still enough knowledge to make me nervous.