Surgery: Ins & outs & the process

This post is my attempt to document the process we went through in diagnosing craniosyntosis and getting surgery scheduled.  Note: Your process will vary.  You have a different pediatrician.  You have a different insurance company.  You have a different hospital.  You have a different surgeon.  This is just what we went through.  See this page for all of the posts related to that journey.

Suspecting Problems

At Phinehas’ 6 month check-up (October 2012), his pediatrician (Dr. A) noticed that his soft spot was gone already and had concerns about the shape of his head.  He sent us to the hospital to have a skull x-ray done.

The x-ray results came back normal, but the pediatrician still had concerns.  We made an appointment at the Helmet Clinic, but that was still 2 months away.

In the meantime, Dr. A sent us back to the hospital for a CAT Scan in November 2012, which I was worried about, but turned out to be not a very big deal.  The radiologist diagnosed craniosyntosis and the hospital gave us a CD copy of the scan.  (It’s actually really cool to look at.)

Because the radiologist had a diagnosis, we canceled our appointment at the Helmet Clinic (still not sure if that’s the right move to make).  Instead, we made an appointment directly with a neurosurgeon.

Confirming the Diagnosis

In January 2013, the neurosurgeon examined Phinehas, read the radiologist’s report and looked at the CD himself and confirmed the diagnosis.  In addition, that’s when we learned that surgery had to happen.  A helmet wouldn’t unfuse the bones and cause the head to grow in the right direction.  Actually, we didn’t have to have surgery as this isn’t a fatal condition, but he could (no one knows) start to have brain growth restriction and his head shape will only continue to grow in a triangle-like shape from his forehead out.  He operates with a plastic surgeon who has a specialty in craniofacial surgeries, so we made an appointment with him as well.

We met with the plastic surgery, who confirmed what everyone else had said.  His office is connected to Children’s Hospital, so they were the schedulers.  The scheduling part was very frustrating!  Either I didn’t ask good questions about the process or I didn’t understand the answers because I thought we’d be having surgery in 6-8 weeks.  In reality, it takes 6-8 weeks for them to start processing his case (because they’re just so backlogged) and THEN they’d assign a date.  That was frustrating.  At one point, the insurance company told us the date was March 28th.  Later the surgeon’s office told us it was May 2nd.  Sheesh.

Getting a Second Opinion

The good thing about having a Children’s Hospital in your town is that you have people here that do the surgery.  The bad thing about having a Children’s Hospital in your town is that every other hospital in town refers you to the same person – the same person we’ve already heard from!  We tried to get a second (third?  fourth?) opinion from a hospital in Kansas City, but they lost the CD we sent them.  Eventually, I got a neurosurgeon from the Medical Center here in Omaha to see us, view the CD and confirm the diagnosis.  He confirmed it, and so we were comfortable that surgery was needed.

Insurance Approval

The surgeon’s office took care of all of this for us.  Eventually, we got a letter from the insurance company stating that it was approved and that’s all we needed.  We have a High Deductible Health Plan, so we knew we’d be paying plenty out of pocket, but that’s where our HSA was going to come in handy.

Pre-Op Appointment

Before surgery, Phinehas had to do a pre-op appointment with his peditrician.  Since surgery was just after his first birthday, his 1-year check up doubled as a pre-op appointment.  They just had to send a letter to the surgeon’s office with brief medical history and stating that he was in good health.

Surgery

In May 2013, we finally had surgery!

MLS: It isn’t a date!

(MLS: My Love Story – Part 7!)

Eventually, when the time was right, when Jeff did ask me out, he was clear that it was a date.  I think his exact words were: “Will you go on a date with me?”  Loved that!  That’s clarity producing, right there!  So we went on a date.  A couple of them actually – over the next few weeks.

Then it was Christmas time and he had taken some time off work.  At that time, I was actually working for a ministry, but the ministry’s office was at his house (yeah, looking back on that, I think that’s weird too).  Anyway, I was there working.  He came into the office and asked: “Hey, wanna go grab lunch?”  Sure!

So, we decided on Hardees (I think).  We waited in line for our turns to order and while we were there, (something like) this conversation happened:

Jeff: “Lunch is on me, okay?”
Me: “Nope!”
Jeff: “What?  I want to take you to lunch.”
Me: “Thanks for the offer, but since you didn’t say this was a date, it’s not a date.  And since it’s not a date, I’ll gladly pay for my own.”
Jeff: “Really, it was my intention for this to be a date!”
Me: “That’s really kind, but there’s no need.  I can pay for my own.”

By that time, we came to the front of the line.  Jeff ordered, looked at me, raised his brows as if to say “Are you sure?”  I nodded and he paid for his own.  I stepped up and ordered and paid for my own.

We had a follow up conversation at the lunch table that went like this:
Jeff: “So, I want to be clear about things.”
Me: “Okay.”
Jeff: “If I would have said ‘Want to go to lunch date with me, you still would’ve said yes, right?’”
Me: “Yup.”
Jeff: “Okay, If I would have called it a date, then you would’ve let me pay, right?”
Me: “Yup.”
Jeff: “So, you’re not saying no to going on a date with me?”
Me: “Nope.”
Jeff: “And you don’t object to me paying for dates?”
Me: “Nope.”   (We had already had the conversation where he told me that he wanted to pay for our dates.)
Jeff: “So, this isn’t a date because I didn’t say it was a date, but otherwise, it would’ve been?”
Me: “Yup.”

From that day on, he was always clear to say “Will you go on a date with me?” (Which was awesome because it was just one more sign that this wasn’t a guy who was looking to get by with as little cost to him as possible – financially and otherwise.)

Months later, we talked about that incident and I asked Jeff: “Did it make sense to you why I objected that day?”  His answer: “No, not really.  We’d already been on a few dates, so it wasn’t like I was trying to start something and be unclear about it; I was trying to continue something.  But if it made you feel better, then it was okay by me.”

I look back now and think how unneccessary it was (for that one incident), but, at the time, I guess I needed that clarity or to at least to let him know that I didn’t expect him to pay for every thing any time we both happened to be in the same place.  I guess it did what I intended because if we went somewhere amongst a group of people (say lunch after church on Sundays), I didn’t expect him to pay, nor did he expect to pay.

I wasn’t embarassed having the conversation and I hope Jeff wasn’t either (he doesn’t think he was), but it was a little bump-in-the-road, awkward type moment that’s part of my love story!

16 week check up!

This pregnancy is 16 weeks along this week and I had a check up today.  All went well – very short appointment and definitely drama free!

Baby Heartbeat: In the 140s (which is where Phinehas was at this same appointment).

Weight Gain: None Yet

I’m starting to feel some movement.  Definitely not consistent or regular, which is normal at this point.  It feels a little different than with my first pregnancy, but it might be that I just remember what “later in pregnancy” movement feels like versus “early in pregnancy” movement.

We’ve got our 20-week anatomy scan scheduled for June and we’ll be finding out the baby’s sex at that appointment.

MLS: Going on that first date

(MLS: My Love Story – Part 6!)

So, Jeff had asked me out on an honest-to-goodness first date.  I had gone home to drop off the things that I needed to and just needed to wait for him.  By the time it got close for him to pick me up, I was becoming quite a nervous wreck.  Should I have changed my clothes?  I mean, he just saw me an hour ago!  What does it say if I did change my clothes? What did it say if I didn’t change my outfit? I mean, the jeans and a sweater that I was wearing was a pretty good first date outfit, right?  Should I do my hair differently?  It was already curled, but maybe I needed to have different curled hair for a date.  What kind of hair does someone have for a date anyway?

I distinctly remember sitting at my kitchen island watching TV just trying to take my mind off what was about to happen.  “Hi, my name is Jayme and I’m a dork.”  In retrospect, it was probably good I only had an hour’s notice – I might have talked myself out of the date just from fear!  (Not that I recommend only giving an hour’s notice when asking for a date – that’s just how this first date all went down.  I’m being descriptive, not prescriptive.)  Jeff later told me that he didn’t have too much time to get nervous as he had to shower, figure out a basic plan and drive to my place.

So, he picked me up.  He walked me to the car.  He opened my car door for me.  In the car, he said that he was thinking about going to Rick’s Boatyard for dinner – if that was okay with me.  It was. And Omaha’s Pedestrian Bridge was just a little bit away from there, so he thought we could walk over there and walk along the bridge over the Missouri River.  Sounded good to me.

That’s what we did.  Dinner wasn’t super fancy (but kind of fancy – more than an Applebee’s anyway).  Not too many awkward moments or anything.  Having known each other for a year already, we knew the basics about each other like families and jobs and churches and hobbies, so really, it felt quite comfortable.  We did dig a little deeper than we had before, but truthfully, I was just in awe that I was on a date with him!

After dinner, he asked if I wanted to walk or drive over to the bridge.  It was just a few blocks away, so I thought we should walk it.  But then it all of a sudden felt really cold!  (And I didn’t bring a jacket.  In late November.  Doh!)  So he offered to drive us over there or he had a blanket in the trunk for emergencies.  I took him up on the blanket and we walked over.

It’s a neat bridge and I don’t think I had been on it before – particularly not at night when it’s all lit up pretty.  We walked across it, so that I could touch the Iowa side of the bridge.

After the walk, he suggested that we head to a coffee shop.  Neither of us drink coffee, but we both got cider.  They have an upstairs loft area that opens up to the restraurant, so we took our drinks up there and continued talking.  By now, it was about 9:00 p.m. and I could tell that Jeff was getting really tired.  He wasn’t talking as much as he had been.  He yawned a couple of times.  I must have been pretty boring!

Luckily, he said something about how he had an early morning, and it wasn’t me, but that he was getting tired, so could we call it an evening?  I said of course.  I’m so very glad that he said something otherwise I probably would have wondered if it really was me.  Was 4+ hours with me too much?  Was one date enough that he now knew that he didn’t really like me?  What could I possibly have said? I was further reassured when he asked me for a second date on the way home.  So very nice to have that knowledge!

He pulled into my driveway and I got out of the car (should I have waited for him to walk around and open my car door?  I didn’t know – I just got out.)  He walked me up to the steps in the front of my house and stopped on one of the lower steps while I got my keys out and unlocked the door.  I said Thanks.  He said You’re Welcome.  I said Have a Good Thanksgiving. He said You Too.  We both said Goodbye.

Here’s where his memory of that moment and mine differ.  He says:

• I had my keys ready to go in the car even before getting out.
• I bolted up to the front door.
• I acted super nervous that he would try to kiss me.
• He was at least 4-5 steps below my front porch, where there is no chance that he could try anything.
• I said Good Bye super fast and slammed the front door.

I say:

• I walked at a normal speed to the front door.
• He was just a step or two behind me.
• I said Good Bye in a normal speed.
• I unlocked, opened and shut the door like a normal human being.

I learned (later) that he was really scared of ending the date so early.  He had an expectation that when you took a gal out, you’re not supposed to have her home by 9:00 p.m..  He was worried about me seeing him as boring or dull or cheap or something.  Which those thoughts never entered my mind, but I can see how a man would build those expectations for himself, given our culture.

Lessons learned:

• Just because a guy yawns during a date, it might not be the end of the relationship.  He may genuinely be tired.
• Your definition of walking and talking normally might not match his.
• How far away someone seems to be from you is relative to your nervousness.

So many theories on what is “healthy”

Seriously…why are there like 18,002 theories on what it means to eat healthy?  I’ve watched 6-7 different documentaries on Netflix, read 4-5 different books, looked at countless websites and it’s just mind-blogging!  Doctors disagree.  Nutritionists disagree.  Everyone disagrees.

Some have said that God never intended us to eat animal products.  Others would say that He has given us every good thing and surely, bacon is a good thing.

Some have said high-fat diets are fine – provided the fats are “good” fats and not a man-made chemical (think real butter vs. margarine spreads).

Some have said to focus on veggies, veggies, veggies for all your nutrition needs and you don’t need meat at all.  Others would say that might be a nice idea, but highly impractical and it just doesn’t work out that way.

Some say that humans are not baby cows, so why do we drink milk from cows as if we were?  Others would say that dairy is a super food, great for us.

Some say that carbohydrates are needed and good and just get them from whole wheat sources.  Others would say that they are largely empty calories, proving few nutrients for the calories that they provide.

H-O-L-Y   B-U-C-K-E-T-S!  Who to believe?

 

MLS: Getting asked out

(MLS: My Love Story – Part 5!)

Eventually, Jeff asked me out.  On a date!  But the actual asking-Jayme-out-on-a-date wasn’t a smooth process.  Not his fault.  Not my fault.  Not anyone’s fault, really.  Just one of those things.

The day started off like any other Saturday morning in November.  (November 22, 2008 to be exact!)  I had just moved in with a new roommate a couple of weeks ago, so I was still kind of settling in.  I didn’t have any major plans for the day – maybe I’d organize, set things up, buy some groceries, who knows?

I believe it was early afternoon when Jeff called to ask if I wanted to come over to a mutual friend’s house and play board games with a group that was assembling there.  Sure!

I got there.  We played games.  There was about 10 or so of us.  At one point in time, someone asked “What’s everyone doing tonight?”  A few of the people were heading to a friend’s birthday party (Birthday Bob), but I didn’t know him well and it was quite a distance away, so I hadn’t planned on going.

Late afternoon (around 4:00), the games were breaking up.  The party goers were going to go get ready for Birthday Bob’s party.  Others had other plans.  Somehow, it was just Jeff and I left alone in the kitchen.  (Okay, I might have hung back intentionally taking my time about leaving, but I wasn’t super awkward about it. I don’t think.)  Anyway, cue music from the heavens…

Jeff: “So, you really don’t have any plans for tonight?”
Me: “Nope.”  (Hoping that this might be the moment that he’d ask me out, but I had been here before, so trying not to get my hopes up.)
Jeff: “Well, then I was wondering…”
Enter another friend!  Let’s call him Friendly Fred.
Friendly Fred: “Hey, did you guys see that there are deer in the street?”  (Note: This house was near a wooden area near a river.  Deer were quite frequent.)
Jeff: “No, we didn’t.”
Jayme: “Nope.”  (Starting to blush and looking down, not making eye contact with either of them.)
Friendly Fred: “Yeah, it was pretty cool.  I saw one jump the fence and start walking across the street.”
Jeff: “Yeah, they do that.  I noticed that they’ve been eating some of the flowers near the side of the house.”
Friendly Fred: “That’s just so cool.  I mean, they really are really neat.  Hey, where did everyone go?”
Jeff: “Some of them are going to Birthday Bob’s party.  Some had other plans.”
Friendly Fred: “Oh, can anyone go to that party?”
Jeff: “I think so.  You can get a hold of Carpooling Cathy as I think a group of them are carpooling to leave at around 5:00.”
Friendly Fred: “Neat.  Are you guys going?”
Jeff: “No, I don’t think so.  We don’t know Birthday Bob very well.  I don’t know what I’m doing yet.”
(At this point, I start to wonder if I should leave. What’s a good way to end this conversation with Friendly Fred?  Plus, I thought Jeff was going to ask me out, but now the moment is all ruined.  And what if he’s changed his mind during all of this?  Then that’s even more awkward if I stick around.)
Friendly Fred: “Okay, well, I think I’ll go call Carpooling Cathy and see if I can get a ride.”
Jeff: “Sounds good.”

Finally, Friendly Fred leaves!  And I continue my “insecure girl routine”:  Should I follow and leave too?  Should I stay?  Did I mess up my chances? Did Jeff re-think his decision?  Maybe I read him wrong!  Maybe he wasn’t going to ask me out after all!  Maybe he wishes I would just leave, right behind Friendly Fred. Oh my goodness!  Oh my goodness!  Why can’t the Rapture happen now!?  Is this any way for a 28 year old to act?!

Jeff: “So, I was saying before…Since you don’t have any plans tonight, I was wondering if you’d like to go on a date. With me.”
Me: “Really?” (Smiling.  Blushing.  Probably just now starting to look at him again.)
Jeff: “Yes, really.  With me.  If you want.”
Me: “Yes, I would love to.  But I need to run home first.”  (I really did, I had something in my car – I can’t remember what – that I needed to get to my roommate before that night.)
Jeff: “Okay, that’s fine.  Why don’t I pick you up in like an hour from now?  Is that enough time?”
Me: “Yes, I just have to drop something off.  I could meet you back here though if you wanted.”
Jeff: “Nope, I’ll come pick you up.”

So he did.  An hour later, just as promised. (Turns out he was actually there early, but he parked a block away and waited in his car for 10 minutes before pulling up into my driveway, so that he was right on time.)

More to come on that actual first date…just know that it was a good first date, even if it took some effort to get the question asked!

Craniosyntosis Surgery: Day 2

I do plan on updating more later – I’d like to be able to help other parents with an idea of what to expect, but for now, here’s a brief update!  Update: See this page for all my posts on our craniosyntosis journey.

The surgery didn’t take as long as expected, but it took longer in Recovery before we were able to get back to him.  But I think that was more for paperwork reasons.

We had a good night, all things considered. It’s like having a newborn again – up every 1.5 – 2 hours. He can have new pain meds every 2 hours and he’s been waking up about 1 hour, 50 minutes ready for them. That part is actually nice because it allows the nurse to do her checking on him without waking him up! This last round it’s been 3 hours or so without him seeming to need pain meds, so that’s really progress. This last wake up, he just wanted to be held!

One of his IVs fell out (or he pulled it out) from his hand, but that’s okay because he still has one in his foot. As long as he has one, they don’t have to poke him anymore.

He’s more swollen than yesterday, but not by much. The doc this morning said that it will swell more when they take off one of the head wraps later.

One of his blood counts (hemoglobin) is low, so there’s the possibility that they’ll need to give more blood. But it’s not too low yet.

We’re going to keep doing juice & water, make sure he keeps it down and then move up to solids (which, to them, is applesauce!) I guess solids is a relative term!