Showing posts with label post-op. Show all posts
Showing posts with label post-op. Show all posts

Monday, April 2, 2012

2 Years Post-op

Friday passed without much fanfare, but it marked a milestone: 2 years post-op for Max's second surgery for metopic craniosynostosis.

Max's first 18 months were difficult ones. It felt like one medical problem, one specialist, one hospitalization or surgery after another. Craniosynostosis was such an ugly word that took up so much of our time, energy and emotion.

But to look at Max now, you would never in a million years guess what he's been through.


I might be a bit biased, but isn't he adorable? We are so proud of him. He is such a smart, charming, funny little boy, who is meeting all his milestones and has grown out of all his initial feeding problems and other health struggles.

I am so grateful that the majority of the cranio ugliness is behind us. We are supposed to follow up yearly with our cranio facial surgeon, but for various reasons we find ourselves right now without health insurance (for some strange reason, it's really hard to find a company willing to insure a 3 year old who has had 4 surgeries and 4 hospitalizations,) so we'll wait on the follow up visit for now.

For the most part, we're pretty satisfied with the results of the surgeries. The top of his head is ridiculously lumpy and bumpy, but he has so much fabulous hair that no one would ever notice. There are still a few things that concern me- he seems to have some indentations above his eyebrows that are getting more pronounced, and there's some weird ridges on the edges of his forehead. But let's be realistic: I'm probably the only one who would notice them in a million years anyway.

I'd be lying if I said the journey we took with him wasn't the hardest thing we've ever done as parents. I'm also very grateful to say that craniosynostosis occupies very little of my time and energy these days. And that's just the way I like it, thank you very much.

Friday, April 1, 2011

Craniosynostosis Surgery- a year later

Craniosynostosis.

Before my son was born and diagnosed, I had never even heard of it.  Once he was diagnosed, I had to ask the doctor to say it again and again, then finall had her write it down so I could come home and research it.

Now, nearly two and a half years after that diagnosis, not only have we had two surgeries and a whole host of complications to go with them, but I could probably bore you to tears spouting more information, facts and stories than you ever wanted to know.  I could probably challenge most pediatricians in a game of "Cranio Jeopardy" and win. (And wouldn't that be a riveting game show?)  I could tell you the best-known surgeons in the US, (and Great Britain for that matter), I could decribe in depth the difference between the endoscopic repair and the more traditional CVR, and I could give you all the secrets you would need to spend a week at a Children's hospital. 

This week marked a year since Max's second big surgery.  I can't say that I've been feeling nostalgic, but I've done more than a little looking back this week and thanking the powers that be that cranio isn't something we worry about on a day to day basis anymore. 

In general, we are satisfied with the results of the second surgery.  To an untrained eye, (in other words, to anyone except me and other head picking, cranio-obsessed moms,) he looks like any other little boy.  His long crazy curls cover up the fact that the top of his head has more bumps and ridges than a moguls course.  The poor boy will never be able to rock the shaved-head look. He still has some weird lumps on his forehead, some narrowness above his eyebrows, and every so often we'll see what has to be a screw poking out underneath his skin, but there's nothing that would make us consider another surgery for a second. 

I mean, really, could he get much cuter?

I called yesterday to make an appointment for his one year follow up with the craniofacial surgeon.  Just talking with someone at the hospital made me start to sweat, and it took close to a half hour after that phone call before the adrenaline stopped pumping.  Just envisioning being back in that hospital, no matter how benign the reason, gives me a minor panic attack. 

But for the most part, the medical chaos that followed us for the first eighteen months or so of Max's life seems to have subsided dramatically.  He hasn't been to the doctor more than once in the past six months, which is quite a change from the first year of his life, where we were lucky if we went a week without one doctor appointment or another!  He is a bright, happy, cheerful, busy, trouble-making, tantrum-throwing, house-destroying toddler, and thankfully, we wouldn't have it any other way. 

To know Max is to love him.  You can't help be captivated by his crazy hair, his infectious laugh and his hilarious take on life.  (And yes, I realize that his hair is long enough to take over the world, and yes, I probably should get it cut.  But I can't bring myself to do it.  It's his third head of hair.  It's never gotten this long without someone strapping him to an operating table and shaving it off, then handing it to me in a little plastic bag marked "biohazard."  So we're probably gonna be keeping it long for a while yet. And in my defense, it doesn't always look this crazy!) You would never guess all he's been through in life just by looking at him. 
 A year ago, we were sitting in the Pediatric Intensive Care Unit at Primary Children's Hospital.  Max's swelling was at its peak, and we were all praying that his sodium levels would get under control soon so we could be moved to a regular room.  We were trying to find a pain medication that would do the job and desperately praying for comfort for him and for us. 
I still tear up when I see this picture. 

Today, Max spent the morning playing in a cardboard box with his sister, jumping on the trampoline with the neighborhood kids, and watching Elmo videos.  What a difference a year makes.

Sunday, May 2, 2010

One Year, One Month

Yesterday marked some interesting milestones.  A year ago yesterday, we were sitting in the waiting room at Primary Children's Medical Center as our five and a half month old baby son underwent his first surgery. 

It's a good thing that when we were sitting in the hospital a year ago that I had no idea we would be doing it again eleven short months later. 

Yesterday also marked a month and a day from surgery number two. 

Max is doing beautifully.  Looking at him, you would never know that he has been through such an ordeal, not just once but twice.  His head is filled with the normal post-op lumps and bumps, but there is nothing overly concerning, which is saying something because a month post-op from his first surgery, I could still see the triangular shape to his forehead. 

I can't describe how much I would love to put all of this behind us and never think of it again.  We have our first real post-op appointment this week, and I'm hoping that's a significant step towards that.

Oh, and did I mention that yesterday was my birthday?  We got a sitter, saw a movie, and ate crab legs.  Good day. 

Tuesday, April 13, 2010

Two weeks post-op and a lot of random pictures

Today marks two weeks post-op.  We're slowly making our way back to a new normal. 

Still not sleeping much, but I'm suspecting that might have as much to do with two impending molars as it does with post-op anxiety, fear, or other weirdness.

His hair is starting to make an appearance, albeit slowly, so at least he's not looking bald as a cue ball.  I'm anxious for the stitches to start dissolving so that his scar is less noticeable.  Or less inviting to toddlers, children, and well meaning but rude strangers to touch his head and say "what happened to his head?"  It feels a little bit like pregnant woman syndrome where perfect strangers think nothing of coming up and touching your belly.  I can't count the number of people who, over the past week, have thought it was perfectly acceptable to put their hands on Max's scar.  Just for the record, its not okay.  (And am I the only one that thinks it's strange that I even have to explain that?  Seriously, people!  Get a clue!)

So since the girls are out of school for spring break, we decided to spend the day at the children's museum.

I spent a lot of time chasing Max, who thought all his Christmases had come at once.  A room full of balls!  Water I'm allowed to play in!  Kids everywhere!

Playing in the helicopter.

And, since I'm a slightly obsessive post-op cranio mom, I also spent tonight chasing him around with a camera trying to get pictures of his head.  (He looks like such a little boy in this picture.  Where did my baby go?)

Mom, will you quit taking pictures already?  I'm in the bath for crying out loud!

This is the best shot I got of his new and improved forehead.

And we finished out the night with Max and Dad's all time favorite activity.  Do they look nearly identical or is that just me?

Thursday, April 8, 2010

Recovery

I have people calling me, emailing me, texting me, visiting every day asking how Max is recovering.  The easy way out is to talk exclusively about his physical recovery.  He's really doing well in that regard.  The swelling is decreasing every day, both of his eyes are open, his incision site looks nice, and he's requiring little to no pain medication.  We've gone from this: (which I still think is pretty stinkin' cute!)
to this, in just a few days' time:

I'm so grateful that we're home from the hospital, that the surgery is over, that Max is recovering well, that we haven't required another trip to the hospital, but I'm learning that physical recovery only tells part of the story, for him and for me. 

There's a lot of talk among other moms whose kids have craniosynostosis about how awful their children sleep post-op.  We were lucky enough to escape that the first time around.  Max had a four hour nap the day we got home from the hospital, and quickly fell back into a routine. 

We haven't been so lucky this time around.

I'm not sure what it is.  It could be that after having his eyes swollen shut for five very long days that he's scared of the dark.  Or that he's remembering all the crazy, painful, confusing things that happened to him while he wasn't able to see.  Or maybe the natural separation anxiety that happens at this age is being compounded by the aftermath of surgery.  Maybe his body is working extra hard to get rid of all the anesthetic and pain meds that he was filled with for a week.  But whatever the reason, the simple fact is that we are just not sleeping.

Max has never been a wonderful night time sleeper anyway, but it has definitely been moved to a higher level this week.  The only way he will sleep is if he's next to me.   And close proximity doesn't do it- he has to be draped over every inch of me.  And the reason I thnk fear is still playing a part in things is because he wakes up every half hour or so visibly anxious and crying.  I finally gave up trying to get him to sleep on his own last night, and went to bed with him about 9:30.  That was a smart move on my part, because I don't think we slept for more than a half hour continuously all night long. 

It feels very much like having a newborn again.  Max is very emotional and clingy.  He gets hysterical if I try to leave the room without him, and every 5-10 minutes he has to come and cuddle with me before he can go about his day.  We are taking naps every afternoon, and I'm ignoring the resemblance my house has to a toxic waste dump.  I am very much in survival mode: doing only those things that absolutely have to be done.  Which is why I'm still in my pajamas today and its nearly noon! 

Besides the sheer exhaustion, (I'm starting to realize why sleep deprivation is a very real and valid method of torture!) there's an emotional aspect to our recovery that I didn't anticipate.  I've shed a lot of tears this past week, and I confess that there's been more than once that I've wondered why we agreed to do this.  Intellectually I know that the surgery was necessary so that his brain could grow properly, and avoid the risks of increased intercranial pressure.  I felt so grateful that we decided on surgery when the surgeon told us he had found evidences of increased pressure.  But that doesn't help during the crying spells at 2 am, (his and mine!) and when I look at him and can't help miss his head full of baby curls and the way he used to look.

Yesterday, I decided it was time to venture out of the house.  I was feeling more than a little stir crazy, sick of having nothing to read, and craving strawberry frozen fruit bars.  There was only one thing to do.  I dug out a pair of jeans and put real clothes on for the first time in days, broke out the industrial-strength concealer (hoping against hope that it would cover up the bags under my eyes that have managed to reach to my chin!) and decided to brave the great outdoors. 

I forgot that Wednesday morning is story time at the library, and it was swarmed with what seemed like every toddler, preschooler and parent in town.  Max took one look at all the people and started whining.  Normally, he runs gleefully through the library, trying to pull every book off ths shelf; this time, he was clinging to me like a baby spider monkey.  I ran into a friend, and while she was asking me how he was doing, I couldn't help noticing something.

The stares.

People were staring like crazy.

And it wasn't just a quick glace at him and then looking away.  They were out and out, mouth gaping stares. And it wasn't just the preschoolers, it was the moms. 

I've felt incredibly protective of Max since he was born.  Having a child who is different has unleashed the mama bear in me.  And standing there at the library yesterday, watching everyone stare at my baby boy made me want to scream.

Yes, he has a scar from ear to ear.  Yes, his eyes are still a little swollen.  But this little boy will astound you with his strength and ability to overcome.

What I wanted to shout at all of them staring was to either come up and talk to me about it or look away!  I am more than happy to talk about Max, and to build awareness about his rare and often misdiagnosed condition.  But don't just sit there and stare. 

He's a person.

A little person who has been through two enormous surgeries.  And has come through with flying colors. 

Its taking me longer to recover from this ordeal than it will him.

I'm thinking I may need to get one of these shirts and have him wear it every day.

We got our books, our popscicles, and went home to take a nap.  In that respect, I'm glad he's still too little to understand how hurtful people can be sometimes.

I'm so proud of my little boy.  He's such an amazing little person.  Even when he's waking up 247 times a night. 

So stare away.  But don't be surprised if you get a really dirty look from me in return.

Monday, April 5, 2010

There's no place like home (especially after a week in the hospital!)

Before we left for the hospital, I was determined that I would document everything that happened, as it happened, not only so that we could have a record of it for ourselves, but also so that it would be of help to the growing number of moms with cranio babies that I have been in contact with.

Ahhh, what's that they say about good intentions?

The truth is, the time in the hospital was incredibly difficult, physically and emotionally, and there was very little time to do anything besides attend to Max's needs, and then collapse into sleep in any available quiet second.  Now that we are finally, blessedly home, I'm going to try to piece things together. 

We spent two nights, and the better part of a third day in the PICU.  Thursday morning we were promised a transfer, but ended up staying until almost five o'clock while they made sure all his levels were stable.  His sodium was still fluctuating, although trending upward, which made the Drs convinced that it wasn't actually SAIDH this time around.  He did have low blood albumin levels, which bought him three iv bags full of albumin, and a chaser of lasix, all in the hopes of bringing the swelling down.   Within a few hours, the puffiness in his body was markedly lower, although his eyes still looked like he'd been on the losing end of  a prize fight.

We were transferred to the regular floor that night, and took up residence in the NeuroScience Trauma unit.  Happily, all the rooms in the NTU are private, and we settled in nicely.

One of the biggest problems throughout the hospital stay was getting Max to take his medication.  Because of extensive ear infections and whatever else, he has a huge aversion to taking medication by mouth.  Actually, aversion is too mild a word.  Despite all our efforts to give him anything, he would scream like we were trying to kill him and spit every little bit out.  We tried explaining this to the staff, and they would pat us on the arm and tell us "Oh, we'll figure something out."  Max showed them.  While we did morphine via his IV for a few days, we really didn't want to be giving him that much medicine if he didn't need it.  So the next challenge became getting him to take oral pain meds.  They prescribed liquid lortab, and we tried everything to get him to take it.  One nurse though that if we sweetened it with sugar water it would help.  No.  He got maybe a quarter of that dose.  At 3 am Friday morning, one nurse thought if she added strawberry flavoring it would help.  No again.  In fact, it was a complete disaster.  He spit everything out, and it ended up running down his neck and under the bandages covering his central line.  Utter panic ensued. Because the central line goes directly into his jugular vein, everyone was panicked about the possibility of infection, and the central line had to be removed right then.  The anesthesiologist had taped it seventeen different ways, and then stitched it in incredibly tight, so removing it was miserable.  While it was nice to have him connected to one less set of tubes and wires, getting it taken out was one of the most painful things we had to go through in the hospital.

Being on the regular floor had its priveleges though.  When Max was awake, all he wanted was to be up.  We spent hours walking the floors of the hospital and taking him for rides in the wagon all around the unit.  When we weren't wandering the halls, we were standing and swaying or rocking in the rocking chair.  He started to get incredibly anxious if one of us wasn't holding him all the time, because he knew as soon as we put him down or someone else touched him that something annoying, uncomfortable or painful was going to happen.

There aren't words to describe how difficult it was to see him struggling like that and not be able to do much to make it better.  It was scary to see Max so depressed.  He wasn't talking, signing, or giving us any real glimpse of his personality.  I can't imagine how scary it would be to be a baby and have all these painful things happening and not even be able to see what is happening or who is interacting with you!  We kept praying for his eyes to open, even just a little bit.  His last surgery was so different- his eyes were only swollen shut for about eighteen hours or so, and we hadn't seen his eyes since before the surgery!

Friday was by far our most difficult day in the hospital.  Max was refusing everything by mouth: food, water, breastmilk, and especially medication.  He got put back on IV fluids, which felt like a huge step back.  We were trying to avoid morphine, but the rectal tylenol they were giving him just wasn't strong enough, and by Friday morning we were dealing with an absolutely hysterical baby.  Nothing we could do could get him to stop screaming.  he was obviously miserable.  Finally, they decided to go ahead and push the morphine so that we could get his pain under control, and then the doctors and nurses went to work to try and get his pain managed better.  They finally decided to discontinue the lortab and start trying oxycodone, a stronger medicine that required a much smaller dose.  We decided to do everything we could to get his med in him on time so that he could finally start to feel better.

The new medicine made a world of difference.  He slept most of the afternoon on Friday, (as did we!) and by Friday night, we were finally starting to see a touch of his personality.  We got a few smiles and he responded to us more, although we could tell he was still uncomfortable.  We had all but given up on the hope of going home on Saturday.  We were told we weren't able to go home until his pain was managable and he wass eating and drinking everything he needed.  We resigned ourselves to hanging out in the hospital until Easter Sunday, and kept out fingers crossed for him to start feeling better.

Friday night was the turnaround.  They gave him an enema to get everything cleared out from the surgery, (and clear out he did, almost all over me!) and that made him visibly more comfortable.  Then he proceeded to sleep nearly the whole night through.  He woke up to take his meds and then went right back to sleep, and Saturday morning, he seemed like an entirely different baby.  Although his eyes were still swollen shut, he was trying to play with me, he wouldn't let go of the iphone, (its quite funny to see a baby who can't see try to play his favorite games!) and most importantly, was begging to eat.  He downed a string cheese like he was starving and then ate a plate of scrambled eggs without taking a breath.   Our doctor came in and told us that she was ready to send us home if we were ready to go, and we jumped at the chance. 

We gave him a bath to remove a week's worth of surgery goop, medicine, antibiotic ointment and whatever else from his hair, (that they were supposed to shave but didn't) filled what felt like a thousand prescriptions, gathered up our things and headed home.  It only took Max a few minutes to realize that he was home, and he immediately wanted to get down and explore.  Problem was, his eyes were still swollen shut.  So he would toddle around for a few minutes, then bump into something and scream.  Then we would pick him up to comfort him and he would scream because he wanted to be down.  We were petrified of him falling and breaking open his brand-new head, sending us right back to NTU room 2022, so we spent the next few hours following him around to keep him from falling, and trying to convince him it was okay for him to go to sleep. The battle for sleep took about two hours, a dose of pain meds, and a few tears, but Saturday night's sleep was well earned.

Seeing his eyes open just the tiniest bit on Sunday morning brought us all a sigh of relief.  Even though it was just the tiniest slit, Max was thrilled to be able to see what was going on around him, and was quickly back to his old antics.  It took him about 30 minutes to find the box of baby wipes and start emptying it, and he probably would have spent hours playing on the iphone and the xbox if we would have let him.  The only trauma yesterday came when we sat him up in the high chair and shaved what was left of his hair.  The surgeons told us they were going to shave everything before the surgery while he was under anesthesia, but when they removed his turban Friday morning, they had shaved a strip about three inches wide, leaving him a tiny patch of hair in the front and a see of crazy curls in the back.  As much as it killed me to lose all those baby curls, it will be easier to take care of and look a lot better.  So Tom got out the clippers and we buzzed all his hair.   He wasn't at all happy about it, but we can now see that his head is *perfectly* round, shaped just the way its supposed to be, and yes, he still has a nasty scar.

So now, Monday morning, things are blessedly back to a new normal.  He's a little bit more clingy and scared than normal, (like I can't leave the room without a screaming fit,) and his eyes are barely open, but from the way he's acting, you would never suspect that he had been through such a major trauma just a few days before.  Its going to take me much longer to recover.  And the house and the mountain of laundry?  Well, they may never recover.
We spent so much time standing, swaying, and rocking. 

And sleeping.  But it never felt like enough.

The turban is off! 

Taking a wagon ride.

This isn't a great picture, but it shows how flat and broad his forehead is now.  We're anxious to see how it looks once the swelling is gone.

So tired after the Friday craziness.

Home!  So glad to play with familiar toys!  (And you can see how bad his hair really is!)

After the haircut, playing with the ever-present iphone.

Loving with Grandpa.

Just chilling. You can see his eye open a tiny crack- the other is still pretty closed.

I tried to get a birds eye pick of his head while he was in his high chair, but instead just got this sweet face!


Wednesday, July 29, 2009

Second (and third) opinions

I didn't ever intend for this to be a blog about craniosynostosis. But I also thought, when Max was first diagnosed, that we would have the operation, then we would be done. Sure, it would be difficult. But we consoled ourselves thinking that by the time Max celebrated his first birthday by mashing cake all over his face, craniosynostosis would be a distant memory. As is the case with many other things in my life, nothing ever goes quite the way I plan it to.

Today we met with another craniofacial surgeon to get an opinion about how Max is progressing after surgery. Despite hearing that we needed a repeat surgery from a specialist in Texas, we were both hoping to hear something different today.

The surgeon we saw today was very knowledgeable and very thorough. He actually trained our first surgeon, and told us that he has done around 1500 cranio repairs. His opinion was that Max's head wasn't corrected enough. He couldn't tell us for sure if his bones were shifting post-op, or if the swelling was just subsiding enough to show us the true shape of his forehead, but it was obvious to him that the results of the surgery weren't what they were supposed to be. In fact, he told us that when he first walked into the room and looked at Max, it looked as if Max had never had any surgery at all.

The frustrating thing about the visit with this surgeon is that he wouldn't recommend for or against surgery. He told us that it wouldn't get better from this point, and could possibly get worse. But he also told us that Max is at risk of developmental disabilities just by virtue of having metopic synostosis in the first place, and that doing a secondary correction doesn't decrease his likelihood of delays. (Fortunately as of now, Max is meeting all his milestones and progressing great!) He said that Max is not, as of now, in danger from increased intercranial pressure, and that he could help Max's eyes space out more with a second surgery. But he also told us that a second surgery is significantly more complicated, due to scar tissue, increased risk of bleeding and the fact that he would be undoing something another surgeon already did. Because his recovery was complicated previously by low sodium levels, there is a greater possibility we would be facing that again as well. So we have to weigh the risks of surgery against what we think the benefits would be.

I don't know how we are supposed to make a decision like this. How can I put my baby boy through another long, painful and risky procedure. But then again, I keep picturing how I would feel if Max came to me when he was 15 or 16 and told me he wished we would have fixed this when we had the chance. I worry about doing all this for "cosmetic" reasons. But the women I have talked to whose kids have all been through this keep reminding me that this surgery isn't cosmetic, which would take something normal and make it better. It's corrective, meaning it's taking something incorrect, or defective, and making it normal.

We left the surgeon's office planning to make a return trip in two-three months so that we could evaluate with him the direction Max's head shape is taking, and make a more firm decision about surgery then. When we got home, I found this email waiting in my inbox:

Stacy,
I agree with you. I think the temporal area of the forehead is settling far more than I would have expected. We have two options. First, we could wait to see if his head shape improves with time. I expect that if we take that approach, we would see some improvement, but probably not normalization. Second, we could return to surgery and reposition the brow with some bone grafting to help it remain secure. The bone graft could be taken from surrounding cranial bone so we would not have to take bone from another part of his body. As difficult as it is to say, I believe we would be better off going back to surgery. I am sorry about that. But all things considered, it is probably best to do that now while he is still young enough to not remember. I would love to talk this over with you by phone or in person. My cell phone number is xxx-xxx-xxxx.


So that settles it. One cranio-facial specialist from Texas say surgery, our original surgeon says surgery, and another surgeon says surgery is an option we should consider. It looks like we're headed for another surgery.

The question is now, how do we know who is a good surgeon? I know for certain that we won't go back with our original surgeon. In fact, we're contemplating a malpractice suit at this point. How do I trust that the surgeon we met with today has the experience to tackle what he defined as a difficult and rare procedure? There is another craniofacial surgeon here that we'll meet with just to cover all our bases, but how can I just take someones word for it when it involves my son's life? Naturally, we want the best for him, and if that involves flying to Texas to get the best possible care, we'll do it and enjoy a giant steak while we're there. But even then, how am I supposed to make this decision for him? Who decided I was smart and responsible enough to do this? I don't think I signed up for this...

Saturday, July 11, 2009

The Cranio-coaster

When I first joined up on the CranioKids message board, I heard a lot of moms referring to their journey with craniosynostosis as the "Cranio coaster." Honestly, I thought it was cheesy and a little over-dramatic. I figured that Max would have his surgery, and then it would be over. His head would be perfect, and aside from yearly follow-ups for a few years with his surgeon, everything would be fine. Right?

Wrong.

Turns out that my worries post-op are just as pronounced as worries pre-op. Turns out that I obsess about Max's head at least twenty-five times a day. Turns out that there hasn't been a day when I haven't worried about him having another surgery.

And it turns out that once again, things never go quite as I expect them to.

Ever since Max's swelling decreased enough for me to see the finished product, I haven't been thrilled with the results of the surgery. I was prepared for this- I had read stories of lots of moms who freaked out over every little bump and I swore I wasn't going to be one of those moms. But I started taking weekly pictures, some of which I've posted here. About four weeks post-op, I noticed that his ridge between his eyes had returned. In the eight week post-op pictures, I thought that his head still looked a little triangular, and spent about an hour comparing pre-op and post-op pictures and scrutinizing them for differences.

In the past two weeks, Max's head shape has changed even more, to the point where it is looking almost as it did before surgery. Although the ridge down the middle of the forehead is less pronounced, its still there. His head is tending more and more towards that triangular shape every day. And he once again has significant narrowing above his eyebrows- we refer to that as pinching. Finally, I couldn't handle worrying about it anymore, and emailed some pictures to his surgeon. Wanting to cover my bases, I also emailed some pictures to a renowned cranio-facial surgeon, Dr Jeffrey Fearon, in Dallas TX. Quite a few women on the Cranio board have been patients of his, and he is more than willing to give opinions over email. (Yeah, I know. I sent pictures off to an "Internet doc." But he's THE expert on craniosynostosis surgery. Rather than being a plastic surgeon who does boob jobs and tummy tucks, and an occasional cranio surgery on the side, Dr Fearon does exclusively children's cranio work. People travel from all over the world to work with him. I've seen him not recommend surgery, I've seen him tell parents to watch and wait, and I've seen him recommend surgery. So I felt pretty comfortable asking for his opinion.) Less than 48 hours later, I got this reply:

Thanks for your e-mail. I looked at the pictures that you sent me of Max, and I do have to agree with you that he doesn't really look all that different, aside from the scar across the top of his head. I agree with half of the advice you have gotten, which is to wait. As for the watch part, I do not expect it to get better. We recently published a study that showed that after surgery, children with single sutural synostosis (like metopic) do not grow normally after surgery, with a tendency to grow back slightly toward the way
they were before surgery, over the course of many years. We recommended
slightly over-correcting at the time of surgery to help avoid the need for a
second operation. It is my impression that Max did not get an adequate
correction, and I would not expect it to get better. I am sorry to say
that based on what I can see in the pictures that you sent, I would recommend repeating the operation, but I would suggest waiting at least 9 months from the last operation to let him heal in completely. I would be happy to either take care of your son, or just offer advice (by e-mail,phone consultation, or office visit), whatevr you prefer. Although you didn't tell me who did the initial surgery, I would recommend considering going to a different surgeon for his next procedure.



I was stunned. I felt like I had been sucker-punched to the gut. Although for weeks, my mother instinct had been telling me something wasn't right, I kept expecting that I would be told "Its normal, and you have nothing to worry about. And here I was being told the exact opposite.

We resolved not to do anything until we heard back from our surgeon. He told me exactly what I thought he would- "Its normal, things are progressing the way they should." The problem is, I know they're not. I've been following the pictures of other boys who are Max's age and had surgery about the same time, and the differences are dramatic. Max's head is triangular again! So I pushed the issue, explained to him that things had changed significantly, even in the past two weeks, and he asked for another round of photos. Problem is, he's going out of town for a week, so won't even look at the photos until then. Sigh.

So yesterday, I say Max down for another round of pictures.

Can you see the peak in his forehead? The triangular shape, referred to as "trigonocephaly" is what the surgery was supposed to repair.
This is the picture that really shows it. You can see his forehead coming to a point, and you can see the pinching right above his eyebrows, as well as the narrowness/hollowness of his temples. All of this the original surgery was supposed to fix.
I knew that things weren't right with Max, but when I saw these pictures, I had a good long cry. Because I knew that if I were looking at these pictures for the first time, I would think that kid had metopic synostosis and was going to require surgery. And then I realized that no matter what my surgeon says, we are likely going to have to repeat this entire process.
A few hours later, I got an email back from my surgeon's nurse saying she could see exactly what I was talking about and she would show these to the Doctor right away. I hate the waiting part.
So I sent these pictures off to Dr Fearon in Texas, and set up a consultation for a second (or is it third?) opinion with another cranio-facial surgeon at Primary's. We've actually kicked around the idea of traveling to Dallas to make sure the surgery gets done right the second time...
So it turns out my friends at CranioKids were right. It is a roller coaster. One I thought I would be exiting a long time ago, but it turns out the roller coaster is just gearing up for another go-round.

Sunday, June 28, 2009

8 Weeks post-op

Pardon the messy room in the background. I have no idea how it got that way. No idea.
Incision? What incision?

Yes, he is chewing on my Blackberry.

How else was I supposed to keep him still while I took pics of his head?

Look Ma! No scar!





Thursday, June 11, 2009

103.5

When Max tipped over this morning while he was sitting on the bed watching me brush my teeth, I didn't think anything of it. A minute or two later, when I noticed he was completely asleep, I laughed and figured I was being blessed by the Gods of sleep since we have had such a rough week. When Max fell asleep on my lap during the girls swimming lessons, I knew we had something else cooking. Him, to be exact. At a nice toasty temperature of 103.5.

I'm not a panicky freak out mom when it comes to my kids' illnesses. More often than not, I let a fever run its course, and its typically over and done in a day or two. I'm not a germaphobe, and I'm definitely not a neat freak. However, that's all changed when it comes to Max and his crazy long health history. When I saw his temperature it was all I could do to not rush him to the pediatrician right then.

The good news is, he's still acting relatively normal. The last time he spiked a fever and we were readmitted to the hospital, he was crying inconsolably, and nothing would make him happy. Today he just been a little whiny, a little clingy (this translates roughly into him screaming bloody murder every time I leave the room!) and very sleepy. So as of right now, I'm repeating the mantra "Its just a virus" over and over again, and hoping against hope that we can weather this one without yet another trip to the hospital.

And for crying out loud, can't my poor little boy catch a break?

Tuesday, June 2, 2009

Having a healthy boy.... priceless

Apparently, its expensive to have your kid's skull completely remodeled. Who would have guessed? The bills for Max's surgery have started to roll in, and if nothing else, they are good for a hearty laugh, as well as a prayer of thanks for decent insurance and my new four favorite words: "Out of Pocket Maximum." So, in no particular order, here are some of the things that you probably don't want to know about what it costs to have major surgery, five days in the PICU, and a combined eight days at Primary Childrens' Medical Center.


291 minutes in the OR= $4949.91 or approximately $17.01 per minute.

Daily Charge for a room in the PICU= $1185.10 (Should have gotten a room at the Grand America Hotel instead. Cheaper, better beds, better food! And just so you know, this does not include nursing services or anything else. It just includes ths space we took up in the PICU and the air we breathed.)

1 tsp dose of Lortab= $6.18 (1 Bottle of Lortab is a $4.00 generic prescription at Smiths!)

Plates and screws put in Max's skull to remodel it and help keep his new shape: $15007.06

1 Dose of pediatric Versed to prep him for a spinal tap: $429.63 (billed at a half-hour of concious sedation.)

Total Bill from the Neurosurgeon= $6137.68 (Now really, I'm not knocking the guy. I know he's very smart and very skilled. But he was only with my son for an hour!)

Total Bill From the Hospital so far= $47,382.72. We have yet to see a bill from our main surgeon, the anesthesiologists, or the radiologists. I'm betting, by the time all is said and done, we will top out around $75,000.

Really, its not as bad as it seems. The hospital bills the insurance company, and the insurance company tells the hospital there's no way they're paying $6.18 for every dose of lortab, so the bill is settled for much less than the itemized statements that I have. Plus, we have a $3,000 out of pocket maximum before the insurance company pays out at 100%. But still, its a huge bill! Tom and I can't wait for the day when Max is 16 or 17 and wants to do something dangerous like skydiving or stupid like getting a tattoo, and tells us, "It's my body, and I'll do what I want with it!" Because, um no. Between the outrageous amount of money that we paid for fertility treatments to get and stay pregnant, and the amount of medical bills we're paying now, we own him. For a long, long time!

But speaking of surgery, yesterday we reached the one-month post op mark! Woo-hoo! I am obsessively taking pictures of his head, so here's the latest, meant to show one month post surgery.


Look Ma, no ridge!
Side view. Its a little lumpy and bumpy, but everyone tells us that will even out.

And the top view. I love that the triangle shape is mostly gone. But my favorite thing is that you can hardly see his scar. A few more weeks of hair growth and you'll have to search for it. I don't care what my plastic surgeon bills. It was worth it.

Saturday, May 16, 2009

Two Weeks

I'm a day behind, (What else is new?) but I want to show before and after pictures for the next few months to document Max's progress post-surgery. We're two weeks and a day post surgery, and besides a yucky cough and stitches on his head, you would never know what an ordeal he's been through the past two weeks. Everyone told us that kids bounce back fast, but we have been completely amazed. Three days after the surgery, I was doubting our decision and wondering why we put our little boy through it. But now, two weeks out, things are back to a happy normal.

One week pre-surgery

Day of surgery.

Two days post-op. You can already tell some difference in head shape.

And ta-dah! Two weeks post op! We are noticing a much rounder noggin. (We're calling it his designer head!) And now, for your viewing pleasure, more random Max cuteness.

The famous "We'll show this on your first date" picture.

Toes! (Don't you wish you were flexible enough to put your toes in your mouth? OK, maybe not, but he's pretty thrilled!)

Happy Max.

This was tonight, at Tom's nephew's wedding. I posted this to show how well his incision is healing. Once he grows a little bit more hair and the stitches dissolve, you'll never be able to tell anything happened.

Wednesday, May 13, 2009

The aftermath

We're home again, released yesterday morning. The official verdict? Something called paraflu, diagnosed after they used a machine much larger and more menacing-looking than the blue snot snucker to suck out his nose. Yeah. So wishing they would have done that test before the Nurse Practicioner said the words "Spinal Tap" or "Meningitis" or the surgeon mentioned that he was relieved that we escaped another surgery.

Paraflu is the nasty little virus that causes croup, and it can also cause RSV. We caught it on the early side of things, just as it was causing a rip-roaring fever. It wouldn't have been such a big deal had we not been 10 days post op. Apparently Max is just excercising his family gift for the dramatic. He can't just get a little flu bug. Oh no. It has to be a big mighty flu bug ten days after a huge skull operation that freaks everyone out and results in another nights' stay in the hospital. I know that you have two crazy sisters buddy, but you really, really, don't have to try and out-do them, I promise!

Max has been through a lot in the past two weeks. I have been in tears many times during the course of this because he was so scared, or in so much pain, and I couldn't swoop in and rescue him. And I'm not a wimp, but I had to leave the room when they did the spinal tap on Monday, because I couldn't handle the idea of seeing him go through that and not being able to do anything about it. But the recurring message I heard throughout both hospital stays from the doctors and nurses was "Its such a good thing you're doing this now. He's a baby. He won't ever remember this." and "This is so much harder on the moms than it is on the babies." To that, I call a resounding "bull^%&*!" (Edited for your reading pleasure, and to uphold the illusion that I don't have a potty mouth.)

These past two weeks have changed Max. He's always been such a happy baby; social and loving. He's the kind of baby that works really hard to get people's attention, and when they notice him, he rewards them with a high voltage grin. I was holding him once in the grocery store line, and he got visibly upset when the person behind us wasn't paying attention to him. Well, Max still smiles at people, but he now has a viscious case of stranger anxiety. In his experience these past two weeks, anyone he doesn't know who comes near him is going to make his life hard. At best, they're going to use a cold stethescope to listen to his heart; at worst, they're going to hold him down and repeatedly jab him until they can get an IV in him. By the time we left the hospital yesterday, he would look away if anyone unfamiliar looked at him.

And today really convinced me that what has happened to him has made an impact. He woke really early today, and was ready to go back to sleep by 9am. Problem was, he had no intention of sleeping anywhere outside my arms. And anytime I would put him down after rocking, swaying, bouncing, or nursing him to sleep, he would instantly wake up with a look of panic on his face and start screaming. It was a difficult morning because I was feeling the pressure of a huge pile of laundry, a cluttered house and some very pressing errands to run. (Our car registration is two months overdue and we've been cited twice in the same day for it, and my driver's liscense is expired. I'm trying to avoid getting pulled over and having to explain both of those. I don't think that even the "My son was in the hospital" excuse would get me out of that court date.) Not to mention that fact that my hair hadn't been washed since Saturday morning, (an unscheduled hospital stay will do that to me,) and that I was looking and smeeling something like the creature from the black lagoon. All I wanted was for my baby to take a nap so that I could take a shower and catch up on a few things.

Instead, I spent all morning rocking, swaying, bouncing, nursing, singing, trying to put him down when he closed his eyes, and then seeing him wake up in panic. I could tell he was anxious, scared, and still feeling crappy. I was tired, emotionally drained, and feeling crappy. It wasn't a great mix.

The classic motherhood moment came at about 12:10, when I was sitting in the rocking chair with Max who had exhausted himself into a sleep, with tears running down both our faces. Sweet Ashlynn came in the living room and said "Mom, I'll make my own lunch today, ok?" That was perfect. And when she came in and told me that she made herself a peanut butter sandwich with no jelly, I was just grateful I didn't have to get out of my chair.

So tomorrow, I'm going to remind myself that my poor six month old baby has been through a lot these past two weeks. And if he wants to spend the whole morning rocking in the rocking chair and nursing, I'm going to do it. The least I can do is help his world feel a little more organized and secure. And besides, I washed my hair today, and a day or two of peanut butter sandwiches never killed anyone.

Thursday, May 7, 2009

Home Sweet Home

I have never, ever been so glad to get home!

They decided to discharge us yesterday afternoon. His sodium levels were low, but stable, and the doctor in charge said that his kidneys were kicking in, and that his levels would normalize, but there was no reason for us to sit around the hospital until it did.

So after six days in the hospital, we packed up and left yesterday afternoon. It felt so good to be outside and to take my little guy home again! There is something to be said for a big long comfy couch, a fridge full of your own food, and sleeping in your own bed. I was worried that Max's sleep schedule was going to be completely upside down, but we had a great night's sleep last night, and he's been sleeping this afternoon for over four hours. I've had a couple of naps too, and its amazing to feel like a real person again.

Friday, May 1, 2009

On the other side!

We made it! The surgeon came to talk with us about 5:45, and we were able to be back to see Max about 6:30. He's resting in the PICU now. It was a little tough at first because it took a little while to get a good balance of pain meds on board. But he seems to be comfortable now. If his labs look good in the morning, he'll be released to a regular floor tomorrow sometime.
I've included some pics with this post, but the ones from the PICU aren't so pretty. They're not bloody or gruesome, but they're pretty real. I'm just warning you.
Getting checked out before the surgery.
The "before" picture- you can really see the triganoncephaly here- notice how his forehead comes to a point? That's what the surgery is going to correct.

Playing with Dad, and waiting. (And waiting, and waiting.)

Just out of surgery, in the PICU.

Finally, I get my baby back! His eyes are only open for a few seconds at a time, and he's pretty sedated, but it was wonderful and healing to be able to hold him again.


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