On the First Day of Christmas My Surgeon Gave to Me…..1 Anterior Cranial Vault

Our First Surgery…(click here to see all of the pictures from the surgery)

Nothing can ever really prepare you for the moment you hand your child over, and don’t have a guarantee you will ever see their beautiful smile again.

I have realized in the last year that I am a great at compartmentalization.   Leading up to Jameson’s surgery I had no worries.  He has an incredible team of surgeons.  Dr. Fearon has never lost a patient, and didn’t plan on losing Jameson.  I have not stressed or over-analyzed Jameson’s progress and development in the past year; well I have had concerns about his hearing, but still, nothing that I have stayed up at night worrying about.  The logical side of my brain tells me I have learned how to compartmentalize, so I can stay focused on the rest of my life; my other son, my husband, and work.  But, maybe really, Jameson and the unexpected Pfeiffer syndrome has taught me to only pay attention to the beautiful moments in life because that’s really all that matter.

When I think about Jameson’s surgery, 11 short days ago.  There are a few things that I remember vividly. The first, is that moment I let him go.  I wasn’t expecting to cry, I had armed myself with the world’s leading craniofacial surgeon, and one of the best neurosurgeon’s in the country – what was left to worry about?   But, I couldn’t help it.  My heart felt the greatest tug in the world and I couldn’t stop the tears.  Even as I write this tears still fall.

We didn’t have to give our kisses or let him go until the very last minute.  We sat back in the holding area with him until it was time.  They gave him some “goofy juice’, Versted is the name of the medication.  It made Jameson loopy, and gave him  temporary amnesia so he wouldn’t be upset or remember me handing him over to a stranger – crazy, huh!  Once they took him back we had 5 hours to wait….

Waiting

His OR nurse told us to call her every 30 minutes for updates.  Dr. Fearon had told us during pre-op that the phone ringing in the OR does not bother him, and rather than us waiting for a call, afraid to go to the bathroom or get a cup of coffee in fear of missing a call, said it’s easier on the parents if they just call in.  So, that’s what we did.  We spent the majority of our time in the Children’s Hospital Family Resource Center.  It was lovely.  Free computer usage, a coffee/cappuccino machine, again, free.  No one else was in there, Frank and I had the place to ourselves.  The time actually went by relatively fast.

The last 30 minutes of surgery we were instructed to head up to the PICU, where the Dr.’s would come talk to us once they were done and Jameson was settled in.  While we waited a family came in with cookies.  They had a 2 year old son that had already had 10 surgeries, on his heart and stomach.  He had a g-tube and a trach.  But, he still ran around and was so full of life, running back and forth to the elevators, pressing buttons.  We talked with them for a few minutes.  They live 2 hours north of the hospital, and drove all the way down just to drop off trays of Christmas cookies to every floor that had been a part of their sons hospital stays.  It was so touching to meet them.  They were so kind in so many ways, and their little boy was absolutely adorable.  This is another memory that will stay with me forever.

Moving on, we met Jameson’s Dr.’s.  The surgery went great.  He said that the bones in Jameson’s skull had become quite cauterized, so it was definitely a good time for surgery.  He had tubes put in his ears, and they were able to get 1cm more room in his skull and left space for more growth.  His eyes were stitched once on the sides to prevent injury/blindness from bulging from swelling from the surgery.  For an unknown reason children with Pfeiffer and Apert syndrome’s are high risk during their first surgery for this happening.  As Dr. Fearon was finishing up he noticed extra protrusion in his left eye and applied an extra stitch – this is why his left eye is more closed in a lot of the pictures.

Recovery

Recovery instructions were to monitor Jameson’s hemoglobin to ensure he still wouldn’t need a blood transfusion, and to see if he could hold down clear liquids before moving on to formula.  We were told his eyes would swell completely closed, the swelling would push his ears down too, his fever would probably reach 103-104, and he would probably vomit; this is all normal and not to worry unless the fever lasts longer than 2-3 days.

We had angels looking down, and got the best Christmas present.  Jameson’s fever never went above 100, and only lasted 12 hours.  He didn’t vomit once.  When I offered him Pedialyte he was groggy, but grabbed the bottle right out of my hands :).

Dr. Fearon checked on us twice a day.  24 hours after his surgery he gave us the go ahead to leave the next morning.  His belief is that children do better recovering in the comfort of their own home.  Yes, Jameson’s eyes were swollen shut, and he looked like he’d gotten beaten up, but this was all normal, so really there was nothing more a hospital can do than his family can do at home.  So, we were discharged 2 days after his surgery.

The third memory I will also always have was from the morning of day 2.  We had been moved out of PICU and were up on the Pediatric Ward.  Although Jameson’s little eyes were swollen shut he would bend his head waaaay back to see out of the tiny slits, he so desperately wanted to see what was going on!  I was holding him, and I was drinking a Gatorade.  When I lifted the Gatorade up to drink it, he tilted his head back, reached for the Gatorade and made little slurping movements with his mouth/tongue.  Frank and I just looked at each other and busted out laughing.

My sweet boy also took out his IV catheter.  I had asked the nurse the night before if she could take out one of his catheter’s (he had one on each hand) because it was irritating him.  She said no.  Well, he pulled it out himself, lol!

Home

That’s it, surgery was over, and we came home to big brother Jackson, Nana, and Bacca (my parents ;)).  Jameson has had the smoothest recovery imaginable for such an invasive procedure.  I was hesitant to let him down to play on the ground, but he became so wiggly that I gave in.  On Monday morning, Dr. Fearon’s fellow (he was part of the surgical team) called to check on Jameson to make sure everything was going well.  I told him how Jameson just wanted to play like he used to and my worries about letting him get into everything.  He told me that if Jameson wants to play, let him.  He said that Dr. Fearon reconstructed his head strong enough for 1 year old activity.  He said by 2 weeks post-op his head would be able to withstand a substantial blow if he really fell and hurt himself.

I can’t even count, but he must have 200-300 stitches in his head.  I believe the tubes have made a huge difference in his ability to hear.  He banters back and forth with us more than ever.  His head is also different.  Pictures don’t do justice to the work Dr. Fearon did.  His forehead is so smooth now, and bumps out above his eyes more so than they did before.  One of the eeriest things about the surgery was when I called in to the OR.  I could hear the drill/saw grinding away in the background (I had to compartmentalize that one too!).

I am still amazed at modern medicine/science.  How my 11 month old can have his skull taken off (yes they peeled the skin all the way down the front half of his face, then cut and took off the front skull area!), remodeled, and put back, and have him wake up with a big smile is incredible!  The brilliance, artistry, and expertise that these doctor’s have is such an imaginable gift!

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