A year ago this week…

 

A few weeks pre-surgery

A few weeks pre-surgery, Photo taken by http://www.kamifridayphotography.com

A year ago this week I was preparing my baby for another major surgery.  Fifteen months after the first Cranial Vault Remodeling (CVR) for craniosynostosis, it was discovered that Myles’ skull had re-fused.  This is a very rare occurrence, happening less than 5% of the time.  Lucky us!

CT ScanMatt and I took him to his one year post-op check up with some concerns about a bony ridge running along the top of his head lengthwise (the saggital suture).  We brushed it off as us being overprotective parents but when we voiced our concerns to the surgeons, along with Myles’ developmental delays and balance issues, they agreed it would be prudent to take a closer look.  After the sedated CT scan, we saw that not only was his saggital suture fused (which was a new one for us!), his left coronal suture, which had previously been repaired, has re-fused.

May 21st was the day.  As we did back in 2011, we stayed at the Inn at Longwood the night before for our ridiculously early check in to Pre-op at Children’s in Boston.  It was no easier handing him over to the surgical team this time around…as a mother there are probably very few things that are scarier or more gut-wrenching.  His surgery this time was to be a different repair method: barrel-staving.  His surgery was about 5 hours long, no complications, and he actually did not require a blood transfusion this time around.  (His first surgery he had almost all of his blood transfused).

At our hourly update after the heavy lifting was done, Myles’ surgeon told us the pressure in his skull was immense, pressing so hard on his brain that the shape of the brain had imprinted onto the inside of his skull.  We finally had the answer to why he had not eaten a meal in months, the failure to thrive, the balance issues, and the eye issues.

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The waking up was rough…The anesthesiologist took him out “too quickly” for whatever reason and he was a crazy person.  Not even 30 minutes post op, he was climbing up my body, screaming, unable to open his eyes, unable to settle down.  They sedated him to help him relax and moved him up to PACU, where we spent the night.  His next few days were a pretty normal picture of what it looks like to recover from a skull surgery…lots of pain, crying, steroids, and the lovely roid-rages in the middle of the night.  I had to keep on the nurses for the pain meds so I slept in 4 hour intervals.  The regular doses of narcotics weren’t touching his discomfort so a pain management team came in to take care of him.

Long story short (well, too late for that), Myles has blossomed into a chatty, active boy with a healthy appetite.  He’s thriving at preschool, swim lessons, and chasing after his brother and sister.  The transformation was incredible…within a week of the surgery it was obvious.  Intellectually he has no issues whatsoever.  If I were the bragging type, I’d say he was a little ahead of his peers.  But I’m not.

 

Ready for discharge!

We got discharged on my birthday and it was the best present ever.  A year later, the best birthday present is that we haven’t had any major issues.  We still keep in touch with the Cranio-Facial team at Children’s and I highly recommend if you think your kid’s noggin looks at all out-of-the-ordinary, you give them a call.

 

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Sigh…

My track record with frequent posting is not as I had hoped.

School started.  Karate, swim, gymnastics, Girl Scouts, and YMCA volunteering started.

Crafting took a back seat.

And at Little One’s 6 month appointment couple of things started to change for our family.

I had voiced my opinion on the lack of roundness of his skull at each well baby checkup.  Each checkup I was told to wait and see.  Not only was his head not round, he had a prominent ridge over his left eye.  His face has always showed a bit of asymmetry…one eye is a little higher than the other but nothing major.  At Little One’s 6 month appointment I finally took matters in my own hands and insisted on a referral to a specialist.  I made an appointment at Children’s Hospital, thinking we would be fitted for a cranial band, expecting to meet with the plastic surgeon and then Prosthetics.  Not so much.

We met with Dr. Meara, the Chief of Plastic Surgery at CHB and Dr. Proctor, a Neurosurgeon at CHB.  After meeting with me for a few minutes, Dr. Meara diagnosed Little One and right away, made me feel comfortable about the process.  It was a lot to take in and I left the appointment in a little bit of a blur.

Little One has Craniosynostosis.  In short, his skull fused together too soon, thus causing the ridge over his left eye and the asymmetry.  His case is not a major one, however the surgery is nothing to be taken lightly.  His head will be opened up, the skull will be sawed and put back together, and the recovery is not easy.  I have so many emotions swirling around in my head about this and luckily I have the support of many family members and friends to help him through this.  We are expecting the surgery to be in November.  I’ll update some details here but most of the in depth updates will go into his CarePage.  If you’d like access to it, please let me know.

So of course I had to tie in crafting somehow to this.  Check out what I made last night (Swarovski crystals and a metal frame):

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