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.

Two

Max is our miracle baby. 

I had all but given up hope of ever conceiving a child again.  I had a preschooler, a kindergartener, and a studio of 30 violin students.  I had started working as a doula, and was loving the increasing number of births I was attending.

We had been to two different fertility doctors, done a few cycles with fertility drugs, with no success.  Our next option was injectable drugs, costing around $3000 a cycle.  There was no way we could afford that, and we had no insurance coverage for infertility. 

I had made peace with being done.  I was excited about it.  I wondered why in the world I had decided "starting over" with a newborn was such a great idea when I was so close to having all that time to myself and developing my career.  I had even put out feelers about a possible midwife apprenticeship. 

At the end of the last cycle, I decided I needed to take one more pregnancy test, to prove to myself that we were done.  Then when it was negative, I reasoned, I could get back to the business of living my life and parenting my girls.

Except it wasn't negative.  And we were thrilled.

***

Since we were being followed by a fertility specialist, protocol dicatated a "viability" ultrasound at 6 weeks.  I was destroyed when the ultrasound showed no heartbeat. 

"I'm sorry," the Doctor said "There's nothing there.  We should see a heartbeat by now.  I'm afraid this isn't a viable pregnancy."

I don't remember what else was said, except that he told me that I had less than  5% chance of having the pregnancy continue, and that I shouldn't get my hopes up.  He scheduled me to come in four days later to do another check, and  said we could talk about options for ending the pregnancy at that point.

Waiting those four days was excruciating.  I have never experienced grief like that in my life.

We went back in on a Saturday, to find a blinking little heartbeat, and a Doctor who nonchalantly said "Well, it's a good thing we had you come back in to check."

***

Max's labor was complicated, long, and difficult.  He was born with his cord wrapped tightly around his neck three times, and wasn't breathing at birth.

While I felt his spirit all around me, and knew that he was going to be fine, I found out later that my husband and my mom were very scared for his life.

It took some maneuvering by my midwife and some fancy resuscitation before we heard his first cry.

***

Shortly after he was born, we started on the crazy medical roller coaster.  Besides finding out that he had a major skull condition, he was also having trouble feeding.  We were told he was aspirating fluid into his lungs, which was a very dangerous condition, and that he couldn't breastfeed anymore because the risks to him were just too great. 

Once again, I was devastated.  Breastfeeding was the only thing I knew.  I consulted with doctors, with lactations consultants, wth specialists.  They all told me the same thing- no more breastfeeding.

What they didn't count on was Max, and the miracles we had already experienced.  Lots of prayer, a priesthood blessing, and I continued to nurse my baby boy.  He weaned a few months ago after 20 or so months of peaceful breastfeeding.  He hasn't had a single lung issue.

***

I've talked a lot on this blog about Max's surgeries.  They are, undoubtedly, the hardest things I've ever had to go through as a parent.  There are no words to describe what it feels like to see your tiny baby hooked up to tubes, wires, and breathing machines in the ICU.

  To be told that he has a baffling complication from surgery that no one can figure out.  To be told just a few short months after the first surgery that the first surgery was a failure and that he would need a second, just as dramatic and invasive as the first.

Everyone says kids are reslient.  I would never have believed that a week after getting his skull opereated on that he would be beaming up at me, almost as if nothing had happened.

***

We celebrated Max's second birthday yesterday.  He is a charming, hilarious, full of trouble little boy, like any two year old should be.  It's been months since he has needed a trip to a Doctor's office, an instacare, or an ER.  (And yes, I did just knock on wood.)  His scar is nearly completely hidden in his mop of crazy curly hair.  He shoots basketballs like a pro, (you mean you don't have a Fisher Price basketball hoop in your front room?) is learning new words at a rate of 5-10 per day, (his newest and cutest is "elevator,") and shows no sign of adverse effects from any of his crazy adventures. 

He makes me laugh every day.  He helps me not to take myself so seriously. 

And he taught me a lot about miracles. 

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. 

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?

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.

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!

Day 2- Hanging in the PICU

We had a mostly uneventful night.  I actually slept for about four and a half hours straight, which I think is a new all-time record for a sleeping closet in the PICU.  I came to visit Max about 4:30 am, and he was quiet, content, and very swollen.  We are surprised at the extent of the swelling this time around.  It started setting in immediately after sugery, and his eyes have already been swollen shut over 24 hours, where last time the swelling didn't start for about 12 hours, and then his eyes were only shut for around 12 hours.  (Hopefully, this means there was more extensive work and that they actually got the job done!)  His sodium levels were not behaving throughout the morning, and when they took a nose dive at the 8am check, I knew we were going to be here another day.

Luckily, because he has been through this before, no one is near as concerned as they were when we faced this in May.  We've still been doing sodium checks every two hours, but no one is concerned about the little fluctuations, and although his levels are still quite low, they're stable and moving s-l-o-w-l-y in the right direction.  We're hopeful (but not holding our breath) that we'll head to a regular room tomorrow.

So today has been blessedly uneventful.  It has amazed me how being in the hospital completely overtakes your world and changes your perspective.  I spent the last few weeks dreading the hospital stay, but now that we're here, in the middle of it, adrenaline and survival skills kick in, and before I know what's happening, being in the hospital seems like the most normal thing in the world.  You learn to rejoice in the really small things, (a shower, clean clothes, a baby that's sleeping because he's not in too much pain,) and have great conversations with other parents and staff members that you've never met before. 

I guess what I'm saying is that as of right now, things aren't too bad.  Don't get me wrong.  It sucks like nothing else to see your baby swollen, miserable and in pain, but considering everything, we're doing pretty well.  We're grateful that he's spending most of his time sleeping, and that when he's awake he doesn't seem miserable. 

Today's big milestone is that he finally is able to have fluids by mouth.  We were given the go ahead to start giving him water in a cup (which he loves,) and after convincing him that we weren't trying to torture him, he was thrilled and started guzzling it down.

A few hours later, he was awake and obviously agitated, and started reaching to me when he heard my voice.  He squirmed and was making familiar "I want to nurse now!" noises, so I stood at the edge of the bed and he latched on and went crazy.  After a few minutes in that cramped position, Tom and the nurse helped me arrange the wires and climb in next to him, and he happily clutched on to me and nursed for the next hour.  He then proceeded to throw up everything that he had just eaten all over himself and all over me, but everyone was thrilled that he was willing to nurse.  And after a dose of Zofran the wonder drug, Max was feeling better too.

After shift change, he heard my voice and started trying to crawl out of bed.  He was so happy to settle into my arms and go right back to nursing, (no vomiting this time!) and Max and I spent a happy hour and a half in the rocking chair.  It felt so good to hold him again, and do something, however small, to help him feel normal and peaceful. 

More pictures are coming, with the same warning- they're pretty graphic. 

You think I look bad?  You should see the other guy!

They had to make a slit in the turban because the swelling was increasing and they needed it to stay on.  Can't wait until it comes off, not just so we can see his new and improved head, but also because Max hates it!  We know he's awake because he starts tapping on his turban trying to get it off!

He loves these little dogs.  He reaches for them and clutches them close to his face whenever he's awake.

Finally getting some water.

Loving some daddy time.

I'm really hoping this is the worst of the swelling. His eyelids are starting to flip themselves inside out.

All tucked in for bed.

I can't say thank you enough for all your support, love and prayers.  I am amazed at the ourpouring of comments and concern for my little boy.  I have amazing friends and family- thank you!

On the other side! (Again!)

We got a call from the OR after about two hours letting us know that the neurosurgeon was starting his part of the surgery.  My heart fell.  After two hours they were just starting the main part of the surgery?  Turns out, they had some trouble getting him to sleep, (turns out he probably metabolizes anesthesia like I do because he ended us needed double the amount that a kid his size would usually need,) some trouble starting his lines, (again taking after mom, poor kid,) and they had to get the ear tubes placed.

And as a side note, can I just say "Hallelujah!" for ear tubes?  When the surgeon placed them, he told us that Max had fluid building up in his ears again, so it was looking like we were heading for another ear infection. 

It took the neurosurgeon another hour to finish removing his skull plates.  When he came back to the waiting room to talk with us, he told us that Max had significant scar tissue and it was "a little more difficult than usual."  Yeah.  What else is new?

I was incredibly antsy and restless at this point- I spent the next few hours pacing the halls of the hospital, running little errands, calling Serene, (who knew just how to distract me!) and probably making everyone around me crazy.  After lunch, I was so grateful to meet up with our surgeon in the hallway and hear that things were finished after more than six very long hours. 

The doctor said that everything went as well as he could have hoped.  Max stayed stable throughout the surgery, he received about a unit and a half of blood, and had quite a bit of scar tissue that he had to work around.  He removed the plates and screws from the first surgery and replaced them with different plates and screws that should dissolve within nine months.  The doctor said he was very pleased with Max's new head shape and felt that he was able to achieve the correction that he wanted.

The interesting part was that the doctor said that he saw some evidences of increased intercranial pressure as he was operating.  Hearing that confirmed to both of us that we had made the right decision to pursue a second surgery.

They brought him back to the PICU intubated because of the heavy amount of anesthesia they had to use.   This added a whole new intimidating mess of tubes, wires and machines to my poor boy.  They told us they would extubate him as soon as he woke up so that they could make sure he could breathe on his own.  We kept expecting it would happen right away, but we were in for a lot more waiting. 

And waiting.

And waiting.

They finally extubated him a few minutes ago when he started stirring and getting visibly upset.  They knew it was time when he started trying to pull it out on his own.  It was really hard to watch, but he looks so much better and more peaceful now. 

His sodium levels, which are a huge concern because of our previous bout with SIADH, are in the low/normal range.  We have to be at 135 to get discharged to the regular floor, and he's at 134.  I'm really hoping they come back up, because I would love to get out of the PICU.  Fortunately, we have a much better set up this time.  There's a small pull-out sofa, a bathroom to ourselves, a closet where I can put my suitcase so I don't end up getting robbed again, a slushie machine down the hall, and much more space.  That, at least, makes me feel a bit less crazy.

They told me I can try to nurse him as soon as he's awake and looks like he's ready for it.  He's in a big bed this time around, so I'll probably just climb up next to him.  I'm going to hang here for another hour or two to see if he'll wake up, because I don't want to miss the opportunity to feed him.  If he doesn't stir, I'll head to the pumping room (where I ineveitably feel like moo-ing!) and then off to my tiny, glorified closet they call a sleep room.

Check that.  Max is now officially fluid restricted due to his dropping sodium levels.  Sigh.  They're not officially calling it SAIDH, but they are working to get on top of it before it gets too crazy.

So now for the pictures.  If you're squeamish, you may want to skip them.   They're not gory or bloody, but they're a little sad, especially if you haven't ever seen this before. 

Playing in the bath the night before surgery.  I was loving playing with his curls for the last time.

"Before" shots- this triangular shape is called triganocephaly- the exact thing we set out to fix.

Hanging in the waiting room, sporting the shiner from last night's fall from the bed.

Rocking the baby scrubs.

Happy as can be after a serious dose of Versed.

Just out of the O.R.

Extubated and very sleepy.  The swelling is starting to kick in.

Waiting

And waiting, and waiting, and waiting.

They took Max back for surgery about 7:40 this morning.  We were told to expect at least 5-6 hours. 

Did I mention there's lots of waiting?

Everything went well last night and this morning, thankfully.  Max decided he liked the hotel beds, and probably would have slept the whole night through had he not fallen out of the bed and given himself a huge shiner on his right eye.  He didn't seem to mind this morning when there was no breakfast, and was so interested in what was going on in the hospital that he forgot to be fussy.  It wasn't until right before the surgery that he started getting sad and begging for milk.

But can I just say that we are so grateful for versed?!?  They even had a nasal spray version, so that we didn't have to fight to get him to take it orally.  Within a few minutes, Max was happy as could be.  He didn't have a care in the world.  (And Tom and I were begging the nurses for a dose of our own!)

It wasn't any easier to hand him over to the anesthesiologist, just because we've done this before.  I was doing okay until I heard Max yelling "All Done! All Done!" as they walked him down the hall. 

So we're camped out in the waiting room, visiting with instant friends and pretending that we don't know what's going on across the hall.