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Surgery Story - Cameron Mark Rondi

 

10 October 2010 – Surgery Date – Cranial Reconstruction  -
Cameron 3rd Cranial Surgery.
 

Leading up to surgery, Cam started having raised Inter Cranial, he was suffering terribly from headaches and was daydreaming, and he simply was not his normal happy self.  We arrived at the hospital extremely anxious, cause Cammie was now much bigger than before (2.5 years old) and will know and understand the pain and trauma he is about to go through, from a parents point of view, so very hard, cause you cannot protect your child or take on the pain they are about to experience. 

 The night prep, Cam was in such high spirits.  The labs arrived to take his blood samples so that the donors blood could be matched and ensure suitability.  Cam had a very good sleep; almost that he was none the wiser of what the day ahead held.  All he kept asking for, in pure innocence was a ride on the golf cart in the parking area; of course we had to comply.  All prepped and ready for surgery we began the journey. 

Day 1    

Due to the complexity of the surgery, Cam had to be put out in Radiology so a Cranial Stealth Navigation could be performed in preparation for surgery.  08h30 he was anaethetised.   

We being the anxious parents waited in the cafeteria, eventually a SMS came through from the Anesthetist, it was now 11h30 and Cam had finished being prepped for surgery.  Our hearts were sore.  The trauma and pain our child was about to go through was unbearable.    It was a very long day for the family; we received a message at 15h45 to say all had gone well and that Cam had just been transferred to ICU for recovery.     

When meeting with the team, they were all happy with the outcome of the surgery, a full reconstruction of the back of his head had been performed, opening up from the base of his neck in a hockey stick shape to his right ear.  They opened the skull to allow for space, and added a hinge onto the mastoid, creating a cavity hopefully allowing additional growth for the future.  Only down side, was a piece of the derma at the base of the head was torn and had to be repaired.  They cut through all of the muscles in the base of his neck, so that would take a while to heal.   

When seeing Cam lying there in ICU, we were crushed, he was in pain, yet was well.   He was a very brave boy, he was talking a little bit, yet was very teary cause he was very sore, when you asked him “are you a brave boy he would just answer, yes!”  He was sedated due to the pain. 

Day 2

ICU, Cam was feeling much better, just still in a lot of pain, but was passing a few chirpy jokes here and there. 

   

Day 3

ICU, He was full of spirits sitting up with his drain and giving the nurses and family visitors a really hard time. 

Day 4

Cam was transferred to High Care; he was doing so well, just extremely frustrated as he is so mobile, yet could not move around the cot much.  Mom was very worried about him, tried to take him to the bathroom, and he seemed to have lost his sense of balance.  Raised this with the Surgeon and Neuro and they did not seem to concerned, yet mentioned we would need to watch this, as long as the wound was draining they seemed happy. 

Day 5

Cam seemed to be doing very well, was in high spirits as he seemed to now master walking with his drip and drain, and he got to see his sister as well.  We were all high spirits as we were told his drain would be coming out.  They took his drain out in the morning and he seemed to be doing well, the base of his neck seemed to be swelling but was not sure if this was to be a point of concern or not.  Cam had his usual afternoon nap, and when waking up, all hell broke loose; he had a CSF (Cerebral Spinal Fluid) leak.  His entire pillow was wet with fluid and a little blood; it was seeping through the entire wound from the base to the top of his head.  I called the docs and in the morning the Neuro arrived and was extremely concerned, CSF is not good, leading to infection, possible Meningitis etc. 

I also happened to mention that Cameron had started drooling excessively.  From what was then explained is basically there was complications caused from the Derma being torn in the surgery, therefore causing the CSF leak.  The complications from this, can lead to water on the brain and very severe infections and complications.  The neuro took cammie straight down to Radiology for a CT scan, as he possibly wanted to do a Lumber puncture and spinal drain and the top of the neck to drain the fluid.  He could not do that as Cammies brain has started growing down next to his spine. 

Day 6

The decision was made to take cam back into Surgery.  We were extremely anxious and did not know what to expect, we were very upset the doctors explained that all was not good, they needed to reopen and basically perform the procedure again, and repatch and stitch the leak again.  There was also a possibility that they would need to remove his 1st vertebrae as this may be a better solution long term, which clearly we were not happy with, as this would lead to cammie having no normal functioning and movement of his neck. 

Cam went back into theatre at 14h30.  He was such a Superhero and was so brave.  He was even joking and put his plastic stethoscope around his neck and urged the doctors to take him back into surgery as he was ready.  They performed the same procedure again, all went well and he was transferred back into ICU at 17.30, he was in a lot of pain and was very upset.    The Pediatrician was concerned as the Antibiotic they needed to give him to try prevent infection, was so strong, he had a very bad allergic reaction, his whole body went red from fever, shame he really was in a lot of pain and was very upset.  They thankfully sedated him to get him through the night. 

Day 7 & 8

Cam was in ICU for an additional 2 days, with a lot of frustration being taken out on us, as being a very active toddler, to being hooked up to all the machines , monitors etc and he was bedridden, all he wanted to do was stand. 

Day 9

He was transferred to high care on the Tuesday morning; he seemed to be full of beans, making jokes with all the nursing staff along the way.  He stayed in High care and had very little appetite.  My precious boy, who is always so gentle, seemed to be having the worst temper tantrums ever.  He was seemingly more aggressive as he was so frustrated with being in the hospital for such a long time. 

Day 12

We were hoping to go home on the Friday and Cam caught a bug causing him to vomit.  This carried on for the Friday and Saturday, eventually he was so upset and just wanted to come home, his drain had drained a lot of the spinal fluid out so doctors were happy to remove the drain.  The poor angel had to go through the pain of having the drain and central line removed again.    We asked to be discharged even though Cam was not keeping is food down, as I truly feel he was very frustrated and needed to get back home to his own environment. 

Day 13

We came home on Saturday and all went well, Cam was like chalk and cheese full of spirits being back home.  He has a huge cut on his head and seems very aware that it is there this time.  He does have pain in his head from time to time but hoping that this will go away.  His aggression has got better; we feel it was just pent up frustration from the trauma he went through. 

1 Month Post Surgery

He is now doing well, running around like a normal 2.5 year old, causing caos.  He wound is healing nicely; he does however have a lot of scars to prove he is a “True Superhero” 

The journey ahead will still be a long and treacherous one; Cam needs to go for eye surgery soon to correct the muscles in his eye caused by complications from his cranio to assist his eye not being pulled back into its socket.   

Please keep him in your prayers, especially hoping that his brain moves into the cavity they have now created, as if it continues to grow down next to his spine, it will not be good and they will have to remove his 1st vertebrae to relieve the pressure of it sitting on his spine.  We do not want this to happen.   

But for now Cam is a healthy happy Superhero living with Cranio…….  His journey still continues.

Thank you to all of you for your enormous support for our family, thank you for all of the prayers and messages throughout this current ordeal.

 

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For more information or support, please contact Robyn Rondi on - robyn.rondi@hotmail.com  or  082 601 8585