Catching up

We've had a super busy week in our family!  As you know, Bugsy had surgery a week ago today.  A week ago!  Can you believe it?  The week has flown.  The Bug is doing GREAT!  The last two nights I've given him regular Tylenol at night and no pain meds at all during the day.  In fact, we came home Saturday afternoon and since then he's had a grand total of 3 doses of Tylenol with Codeine..two at night at my discretion, and one during the day when chicken strips were too hard to chew and were hurting his jaw!  I haven't taken pictures yet today but here is a little photo journey of our week for you:

Bugsy, ready for surgery!

Goofy Juice on Board

Just before he was wheeled away.  They tell us that he rolled into the OR, looked around, winked at the nurses, and said a flirtatious, "Heeeeelllllloooo, Girls!" into that little microphone.

And then we waited. For the longest 13 1/2 hours of our lives, we waited.  Those chairs aren't as comfy as they look! 

Our first glimpse of our post-op Little Man. 

In the PICU.  On the foot of his crib is his "prayer chain" from Cranio Care Bears, a group of cranio-mamas who send amazing care packages to little ones preparing for surgery.  The chain stayed on his bed the entire time he was in the hospital, and was returned to his bed as soon as we got home.

Mommy finally got to hold him Thursday afternoon!  He wouldn't let me put him down.  For three hours. 

Swelling peaked on Friday.  Poor baby.  :(

He missed Little Lou and asked to call her on Friday.

Look, Mommy! I can SEE!!  (He had to use his fingers to open his eyes at this point, but he was excited!)

We finally made it to the playroom Saturday morning.

We played Guess Who!  Daddy had to help the Bug, but he loved it!  (Yes, his eyes are open here.)

Cousins came for a visit and brought huge homemade cards!

He showed them how his "repeller" hat helps him to fly!

We came home Saturday, and the Bug's been GREAT!  He's had a grand total of THREE doses of Tylenol with Codeine.  We didn't even fill his Valium prescription.  And last night I didn't even give him regular Tylenol at bedtime, but he slept all night and woke up pain free!  (Don't tell any of that to the nurse that pushed pain meds while we were in the hospital, okay?)

We've celebrated our homecoming, the birth of our nation, and the birth of SIX year old Little Lou in the last week!  We've done a lot of laughing, a lot of sorting through things, and a lot of changing.  The Bug's head isn't the only thing that was "modified" this week.  There'll be more to come on that later!

Thanks for all your thoughts and prayers this last week and a half!  We've needed them!

Bugsy, July 8, 2011

Recovery

I'm sitting in here in a PICU room at Riley Hospital for Children with my brave little man.

The Bug is currently sleeping peacefully, but off and on he wakes up, takes a drink of water, calls for me over and over (even if I am standing by his side with my hand on his chest), and wiggles around a bit.  When he's awake, he wants me right by his side.  I don't blame him.

At about 2 this morning, Bugsy woke up.  He was scared, he was agitated, he was groggy.  Through his sleepy fog, he called to me.

"Mommy!  Mommy!  Mommy!"
"What, Bugs?"
"Mommy, please get me up."
"I can't, Bugs.  You have to stay in that bed for a while."
"Please get me out of the bed."
"I can't, Bugs."
"Oh.  I can't open my eyes, Mommy."
"I know, Bugs."
"Will you please open my eyes, Mommy?  I can't see you."
"I can't, Bugs.  Jesus closed your eyes so your head can get better faster.  Jesus will let them open when He's sure you're ready."
"But I can't see you, Mommy."
"I know, Bugs.  I know."
"I love you even when I can't see you, Mommy."
"I love you too, Bugs."

Pray for us today as we begin recovery.  He's very swollen already and will continue to swell until swelling peaks, probably late tomorrow evening.  I especially ask that you pray for HIS peace as he can't open his eyes or see...and OUR wisdom as we try to explain.

~~~~~

For those of you who aren't "up to speed," yesterday was a very long day.  Our 3 year old, Bugsy, had a VERY long surgery...a cranial vault reconstruction, #3 in a series of recontructions to correct craniosynostosis, premature fusing of the skull sutures.  The morning started (for me) at 4:40am after about 2 hours of restless sleep.  I showered, rushed around throwing the last few things together,  woke up Isaac (and his daddy), and we were off to the hospital.  We checked in at 7 and had blood work drawn.  At 9:33, the nurse wheeled Bugsy away, plastic microphone in hand, saying hello to everyone he passed.  (The surgeons told us, at 10:30 last night, that when they wheeled him into the OR he looked around at all the nurses, and then said into his microphone, "Hello, Girls!" and flashed his dimples at them.)

And then we waited.

We got an update every hour.  "He's been prepped," or "He's open," or "Still reconstructing."  The one that had us scratching our heads was when the nurse told us, "Dr. Havlik is in a sterile field near Bugsy playing with the bones, trying to decide how he's going to put them together."  If you've been in our shoes, you can imagine how awkward that one was to hear!  We kept it as light-hearted as possible, though.  In fact, I asked that the plastic surgeon write "Dr. Havlik was here" on the bones when he was marking them.  (He told the nurse he ALWAYS does that.  If I see him again before we leave the hospital, I'm going to ask him where he wrote it.  I don't believe that he really does that, though.)  

The day went quick in some parts, slow in others.   For me, the hardest part of the day is always the late afternoon/evening.  I hate it when I see the waiting room start to clear out.  I hate it when I know that most of the patients are at home or in their rooms and we're still waiting.  Watching everyone else leave to see their babies, and knowing that we still have hours left is so painful for me.  Knowing that you'll be there when the nurses and receptionists leave, and that you'll be left to answer the phones yourself...

Anyway, at about 10 last night we finally heard that surgery was complete!  A scheduled "7 hour surgery" took about 11 1/2 hours...and with prep and recovery time, he was away from mommy and daddy for 13 1/2. We were able to talk to the surgeons a short time later, and around 11 we finally saw him.  We moved very quickly from the recovery room to the PICU.  We settled in around midnight, and here we are.

~~~~~

To ALL of you: Thank you so much for your prayers.  We felt God's peace in a big way yesterday.

To Tim and Angelita: Thank you for being a much needed distraction these last few days before surgery!  God knew what He was doing when he planned for you to be here at the exact time we'd really need you!  We love you both!

To Greg and Christine: Thank you so much for caring for Little Lou and Stinky when we couldn't!  You guys have been such a blessing!  I'm glad we've been able to support each other!

To Jack: Thank you for taking care of Harrison...and the house!  We appreciate your acts of love and service every time...EVERY time...we need you!

To our parents: Thanks for coming and spending the entire (grueling) day by our sides!  We know he's your grandson, but it still means a lot to have the support!  Thanks, Rick and Sue, for taking the kids home for the next few days.  We'll Skype with Little Lou, at least, later!

To Ashley: Thanks for organizing some meals for when we get home...AND for taking Little Lou for the afternoon Tuesday so I could finish up some of the packing!

To the Billey family: Thank you thank you for feeding us yesterday!  A special thanks to you, Aunt Maribeth, for doing the shopping and bringing the food...and for spending the remainder of the day with us!  (And thanks to pizza delivery boy Gene!)

To Mark: Thank you for stopping by and saying a very special prayer with Bugsy on Tuesday.  He loved it and I really appreciated you thinking of us.  

To anyone else who's helped with anything the last few day: Thank you from the bottoms of our hearts.  While we could have done this without you, we wouldn't have wanted to!  You've all made it that much easier.  

~~~~

Please continue to keep Bugsy (and mommy and daddy...and Little Lou and Stinky) in your prayers, especially the next several day a we face recovery!

An interview with the Bug

Three weeks from this very moment, I will be sitting in a waiting room at a Riley Hospital for Children, nervously finding ways to pass time as I wait to hear the next hourly update about the Bug.  My family will be trying to convince me to get some lunch, and I will be refusing because I might miss the nurse.  I'll be playing on the computer, mindless staring at the tv, trying to hold in the panic.  I'll be laughing and joking with my family and all the while my heart will be pounding and my palms will be sweating and I'll be anxious.

The Bug, though?  The Bug is ready.  He gets headaches.  He doesn't like his "big head" because it isn't like the other kids'.  (Yes, some of them have been sure to point that out to him.)  He's ready for his "broken" head to be fixed.

I sat down with Bugsy a little bit ago to try and capture his thoughts on the whole ordeal.  We've been talking to him about surgery, telling him what will happen, and trying to prepare his as best we can.  He's about as aware as his little 3 year old mind can manage.  Here's the transcript from our chat.  (He and I have talked about this a lot.  I wanted to capture it, though, for him and for you.)

Mommy:  Tell me about your surgery.

The Bug:  They’re gonna cut my head, and they’re gonna put a new bone in it.

Mommy:  Why are they going to do that?

The Bug:  Cause some of my bone is lost.

Mommy:  Where is it?

The Bug:  At my surgery.

Mommy:  What do you think will be different after surgery?

The Bug:  My head.

Mommy:  What will be different about it?

The Bug:  Cause they’re gonna make it a different shape.

Mommy:  What shape do you think it will be?

The Bug:  Umm…a circle!

Mommy:  Are you scared about surgery?

The Bug:  No! 

Mommy:  Do you think your head will hurt after surgery?

The Bug:  I gotta go talk to Mak.  We’re on a safari right now.

And that was that.  Bugsy scampered away to hunt elephants and such.  Mommy, however?  Mommy is left to ponder.  

We've got big plans to cram a ton of summer into these next 3 weeks.  We're going to be living it up!  If you see us, say hi...and ask the Bug about his surgery!  He's pretty proud.

The Bug's Big Day

***I will preface this post with a warning.  There will be two pictures in this post of a 3D CT scan of the Bug's head.    Some people may find this to be graphic.  There is also some description of the surgery that will take place.  I don't think it's terribly graphic, but if you're squeamish, you may not want to read it.***

Yesterday, we spent the day at Riley Hospital for Children, "Bugsy's hospital."  He had a 3D head CT in the morning and then an appointment with both his neurosurgeon and plastic surgeon in the afternoon.  Some of you have been asking how the day went, so I thought I'd give you a rundown.  (This is copied nearly word-for-word from an email I typed earlier, so it may read somewhat like a letter rather than a blog post.  Sorry...didn't feel like rewriting!)

The CT went fine.  He was NOT happy about the IV.  They wrapped him in a sheet like a burrito...I had to literally lay across his body and hold onto the bed on the other side to keep him still even in the burrito!  He is really strong!  Anyway, it took 2 different veins and lots of digging before they got the IV in.  It was funny, though...once the ICU doc that does the anesthesia came in it went fast!  Bugs was asleep before he finished injecting the medicine...in mid scream he started snoring!  Not exaggerating.  I laughed.  The scan only took about 5-10 minutes, and then he woke right up.  He was groggy for half an hour or so, then we went to lunch and he perked up.  :)

The appointment went pretty well. They are not going to be able to address the back of his head at this time, so he may or may not need another surgery after this one to correct the back.  It will depend on how his head grows after this surgery.  They are hopeful that the asymmetry in the back will become a purely cosmetic issue after this surgery, and we won't correct him for a cosmetic issue.  For some reason (and it's VERY obvious in the CT) his head is growing up and back, but not forward at all.  Comparing earlier scans, his face looks more "forward" now compared to what it way, meaning that his forehead is almost pulling back from the rest of his face.  He has virtually no brow bone, and once again very little eye protection.

This is straight on from the front.  Note the asymmetry of the sides and the height at the top of the forehead.  There's also a very notable hole in the for

Straight on from the left side.  You can see how far backward he's grown, here. (It's not as noticeable with skin on!)  Oh...and the giant holes...

The gaps, which we thought were starting to fill in (and the surgeons did as well) are quite amazing.  Ear to ear, aside from a small bit of bone just left of center, he's got about an inch wide headband where there's absolutely no bone.  In the scan, you can literally see straight through his head.  There is NO protection for his brain at all there.  Just above his eyes, the width of his eyes (outer edge to outer edge) there's another spot that ranges from half an inch wide to an inch or side wide where there's NO bone.  There are several other smaller spots as well, but for some reason, a large amount of the spots where they had to cut the bone are simply not healing.  They don't understand why #1, he's reverting so much to his pre-surgical state, and #2, his bone isn't replenishing itself as it should.

For the surgery, as I said, they will not be able to address the back.  With as much work as they are going to have to do on the front, there's simply no way they can safely position his head to work on the back as well.  They will be starting at the front, above the eye sockets, and they will work their way back as far as they can safely go.  They'll be able to use the same incision line, which they are actually surprised about with the way his head has grown.  They were hoping to be able to cut out the scar and leave him with a pencil-thin line like he had after the first surgery, but that is very unlikely with what they are planning.  They'll be moving his forehead forward to create a brow bone, widening him through the temples, and reducing the height.  They're hoping to address some of the asymmetry on the sides as well, but not the back.  They'll remove any existing hardware.  He has several titanium screws and a titanium plate on either side of his head at the ears.  (We didn't realize this...or didn't remember...who knows!)  They will remove that existing metal and replace it as needed.  There are some screws that have come lose and are tender to the touch, so they will take those out.  (Yes, I did just say the Bug has some screws loose!)

As far as those gaps in the bone go, while they are still hopeful that they'll be able to fill them with "leftover" bone as they reconstruct, they are fairly certain that he will need a rib graft and/or titanium mesh to fill the gaps.  IF they can take just one or two ribs and that be enough, they will do the rib graft.  If it looks like they'll need more than 2 ribs, they will use the titanium mesh or a combination of ribs and mesh.  They'll prep him for the rib graft whether they end up needing it or not.  One concern they have for a rib graft for him is that ribs typically grow back, but since his skull bones aren't growing together as they should, they're not sure whether he'll regrow ribs, either.  One or two missing ribs isn't a huge concern, though.

Likely the reason he continues to have headaches is that his nerve endings, especially in that headband region, are right at the surface.  They would normally be covered by bone, but his obviously aren't.  Once they cover the gaps, he should feel a lot better!

We're expecting about 12 hours in the OR again...2-3 hours to prep, 8-9 hours of actual surgery...12 total hours from hand-off to recovery.  It's going to be harder for her to open him because she has to be so much careful with the "exposed" brain, but then removing the bone should be a bit easier because she doesn't have to make holes, they're already there.  They're anticipating we'll leave the hospital either late Sunday or sometime Monday.

That's pretty much the gist of it.  The neurosurgeon said we're "pros" at this, however unfortunately.  She also said she's praying this will be his last surgery.  :)  Have I ever mentioned how much we love our surgeons??

For the next month, I will try to carry on as normally as possible in the blog world...but please be forewarned that the day of surgery I will be using this as a place to update all of you as we are updated, and will likely post several times.  After that, at least for the next week, I may be updating daily or perhaps not at all.  It'll depend on the progress and how we're all feeling.  In the meantime, just know that we're ready for this.  Some of us are more nervous than others, but we all know that God is in control.

And the Bug?  The Bug is the most ready.  He is ready for a "normal shaped head."  He wants a "small head like Little Lou."  It's almost game time.  We're ready.

A letter to my Bug

I am so glad you were born.

              

You came rushing into the world after just 45 minutes of labor, into the freshly-gloved hands of our street-clothes wearing doctor.  As you lay on my belly and I cut your cord (Daddy didn’t want to), I could tell that something wasn’t right.  No one said a word.  I didn’t say a word.  I knew my concerns would be brushed off as “molding” from birth.  I am sure everyone else hoped for the same.

When you were just 18 hours old, a nurse felt your head and made a funny face.  She said nothing.  Moments after she left the room, a pediatrician we’d never seen came in.  She felt your tiny head, and left the room.  Minutes later she returned, followed by an x-ray machine and 4 techs.  Your soft spots couldn’t be found.  Something was wrong.

When you were 3 days old, we made our first of many—too many—trips to your pediatrician.  When you were a mere 3 weeks old, we met your neurosurgeon.  You had your first CT scan.  We scheduled your first surgery.

Craniosynostosis.  A word that has forever changed our lives.

Four of the six sutures in your skull had fused before you were even born.  The last of them isn’t supposed to fuse until you are nearly 30.  Your little head couldn’t grow.  Your brain was out of space.  You cried in vicious, screaming pain, for 5 ½ months.  The hour or two you slept in a day were spent on mommy or daddy’s chest, upright in a recliner.  We slept in shifts so that someone would be with you constantly to hold you upright, so your head would hurt as little as possible.  We shopped in shifts, so that each of us would get a brief break from the crying.  (I’m sorry, Bud, but we just needed to get away sometimes.)  We were confined to our home, not because you were sickly or unable to be around others, but because you couldn’t stop crying, even with round-the-clock pain medicine.

Two surgeries and a who list of new vocabulary words later, at 10 months old, we finally met you.  

Your pain was finally gone, and you became the happiest baby we’d ever met.  You rolled over for the first time before we left the hospital!  Three years of 3-5 times a week therapies later, you became a “normal” preschooler.  You’re nearly caught up to where you should be!  We’re so proud of you!

In just 6 weeks, you’ll be going into that operating room again, for your sixth surgery in 3 ½ years.  Just a month shy of your 4^th birthday, you’ll face the unknown once again.  Your daddy, your big sister, your little brother, and I will all be waiting for you on the other side.  We’ll be praying for you and longing for you.

You have brought more joy and laughter to our lives than we could ever have imagined.  You are such a ray of sunshine to everyone you meet.  You don’t know a stranger, and your dimples can melt the heart of just about anyone.  I am so glad I have had these years with you.  I am so glad you were born.