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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Surgery, Recovery, and Healing

On September 8, my son Myles was diagnosed with left coronal craniosynostosis.  His skull fused too early and if left untreated, would eventually cause pressure on his brain and possible deformity.  He was seen by Dr. Meara, Chief of Plastic Surgery at Children’s Hospital Boston, and Dr. Mark Proctor of Neurosurgery at Children’s Hospital Boston.  I spent the days after that Googling.

Two months later, to the day, we were checking into the Pre-Op department at CHB, bleary-eyed and sleep-deprived.

Day 1

6:00 am

Lynn was the wonderful nurse who did our intake and checked all of Myles’ vitals.  After making sure he was healthy, we returned to the waiting area, trying to surreptitiously suck down coffee and Cliff bars (eating is not permitted in that area as patients are fasting).  Hubby took charge of Myles so he wouldn’t get upset about not being able to nurse.  Plus, it was easier on me to not have him tugging at my shirt with the hungry, pleading look in his eyes.

7:00 am.

We were escorted up to the 7th floor and waited in the holding area.  We sat on a hospital bed and waited for the doctors to make their way in.  We met with several docs, whose roles I am still uncertain of.  They asked us lots of questions, had us sign consent forms, and asked us if we had questions.  It’s interesting to see the difference in demeanor between nurses and doctors.  Although they were dressed almost identically in the holding area, it was very obvious who was who.  We waited some more.  Myles played with some toys and I sweated and ground my teeth down to nubs.

After an eternity, we were told Myles was ready.  (I’m tearing up as I’m writing this because the memory of it is still so clear.)  The anesthesiologist gave Myles a sweet drink to make him sleep and he fought it.  He was crying and struggling and I just lost it.   It took every ounce of my being not to grab him and run out of the hospital.  With the adrenaline coursing through my body, I’m sure I could have run all the way back to NH.  I squeezed him so hard I’m sure it was uncomfortable for him.  I never wanted to let him go.  I smelled his head and tried to memorize it’s shape.  I squeezed his tiny hands, knowing I’d have to handle him with kid gloves for the next few days.  It was the hardest thing I have ever done in my entire life.  It hurt like nothing has ever hurt.

When they finally pried him out of my arms, another nurse led me, sobbing, to the waiting area.  The liaison nurses were wonderful, supplying us with anything we needed to be comfortable.  We were told the updates would come every hour or so.  It was about 8 am at this point.  I busied myself with figuring out the hospital’s breast pump and the labeling and storage protocol.  At about 8:20, I was ready to scream.

9:30 am

Surgery hadn’t officially started yet.  They told us that Myles’ veins were very difficult and were trying for a good hour, between several different doctors.  The kid’s stubborn, what can I say?

10:30 am

Our next update is that the first incision was made at 10:20.  (Is that a standard benchmark in surgery?  I’ve heard it before…”first incision”.  Sounds macabre.)

12:30 pm

Dr. Proctor came out and told us his part was done, the rest was all Dr. Meara.  Gives us the thumbs up that everything was just as planned.

1:30

Dr. Meara came out to tell us he just finished up and that Myles did very well.  The asymmetry was quite pronounced.  Dr. Meara moved the right side of his forehead forward about 4-5 mm and the left side (the affected side) forward abut 14-15 mm.  He also adjusted Myles eye socket and nose cavity.  Modern medicine is simply incredible.  We had to wait an agonizing hour and a half due to some confusion as to when he was actually moving up to the 7th floor (the PACU).  Once we got there, it more waiting.

The night was eventful and in a PACU, uneventful=good.  Aside from being very uncomfortable, Myles did really well with his numbers, urine output, etc.  He did well enough through the night that I actually focused on my exhaustion and back pain, something I didn’t really worry about before.  I know the PACU does not exist for the comfort of the parents but sweet Jesus, couldn’t they let you sleep on something better than a gym mat on a window seat?

One of the perks I received for being a breastfeeding mom was free meals during my entire stay.  It was nice not to have to worry about leaving Myles’ bedside to get some food in our bellies.  Pro tip:  Get the Dirt Cup.

Day 2 (Some pictures are a bit graphic)

The swelling increased and my baby turned into a Teletubbie.  (What you can’t see i this picture is the gauze bandage knot on top of his head.)  I think it’s the green one that he most resembles.

His pain was evident but the nurses managed it with morphine.  Meaghan, Tina, and Sandra in the PACU were fantastic.  We moved Myles into an adult sized bed so I could nurse him lying down.  It helped a lot.  If I was a marginal believer in the power of nursing before, I am a full-on convert now.  Just having him near me and the skin-to-skin did wonders for his heart rate.  He also settled and his blood pressure dropped the minute he started to suck.  It was amazing to watch.

Day 3

Myles eyes swelled shut completely.  In the pic below, he is wide awake but unable to see.  That was frustrating for him.

He was definitely on the mend!  We had to switch back to a crib since he started to get feisty and try to climb out of bed.  His nurse, Kristen, kept me sane by always making me laugh.  She doted on us (notice I said “us”, not just “him”, since she really took very good care of me too) and accommodated our every need.

The drains were still in but not collecting much of anything.  Myles was so ready to be on the go, he was miserable being in our room.  I walked him up and down the hallways for hours.  At one point, I was sleeping while walking.  When I realized that had happened, I handed him off to a nurse who let me sleep while she played with him.

Day 4

The drains finally came out and the bandages came off!  He looked great (or as great as someone with a giant zipper across his head can look).  Surprisingly, he looks more like his big brother now.

Most of these pictures are taken with my iPhone so they aren’t the best quality.

I don’t know what it is about him but I feel like he’s a whole new kid!

Today is one week post op and the healing that has happened is amazing.  I keep overusing words like wonderful, amazing, fantastic, and great, and truly, there aren’t enough superlatives to describe this whole situation.  I think I’ve suffered a little PTSD in the past few days but I will be okay and we will heal together.

Thanks for reading!

And so much thanks to the myriad resources I have utilized and continue to utilize throughout this journey:

More CafePress Fun!

Feeling snarky…

After browsing what seems like an endless amount of message boards and seeing photos of kids with the same condition as Little One, I realize just how blessed we are that it is not more severe. Yes, we are having major surgery but it seems like we may only need one. Yes, it sucks but it sucks so much more for many people. Just visit www.craniokids.org and see how serious this condition can be.

I want to donate to a foundation dedicated to awareness. I haven’t decided which one yet since I am still so new to this world. If you have recommendations on a Craniofacial foundation that uses its proceeds for research, even better!

I set up my CafePress shop with some snarky t-shirts (and some serious ones) and other gear and will use the proceeds toward cranio awareness.

Come and see!

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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