The Force < CALEB STRONG
Donation protected
Caleb was displaying intermittent neurological distress. I brought him to MUSC in Charleston on Friday for what I truly assumed would be a VP shunt adjustment. As it turned out, MRI showed extremely engorged brain ventricles. He was rushed into emergency surgery for a shunt revision. They had planned to release us Saturday because this is a fairly common procedure. Then the storm hit and we were literally trapped so, out of courtesy, they let us stay an extra day. However, he continued to vomit all day Saturday and Sunday. They took him for another MRI and it showed the ventricles were still engorged, but shrinking. They said his body may just need some time to acclimate because he was backed up with fluid that needed time to drain. Neurology was hesitant to adjust the valve at the time due to the possibility it would be open too far once the excess fluid drained away.
Sunday night, he was very restless and very irritable, but kept angrily insisting to me that he was fine.
Monday morning around 7:00 am, his nurse came in to check on us and i informed her that he has been acting strangely in accordance to his baseline personality. That's when he seized. His left eye went crazy in its socket and his left arm started swinging back and forth. Then, he just went completely vacant. No pupil reaction, no reaction to pain, non-responsive and tachycardia. He was rushed to another unit and given Adavan to stop seizure activity but even after, pupils were completely nonreactive. He began to babble so they rushed him to PICU. Once in PICU, still completely nonresponsive so they decided on another MRI and shunt series x-ray. Once they got him to MRI, he began to prone (which is a frequent indicator of brain damage due to trauma) and turn grey. His oxygen saturation levels dropped into the 70s. He was rushed back to PICU for immediate intubation and shunt tap. His Intra cranial pressure was at 27. It should never go over 10, and it was extremely bloody. It was obvious at this time that he had hemorrhaged sometime Sunday night. At that point they were extremely worried about brain stem herniation which would leave him completely brain dead. It suddenly turned into an episode of House. Twelve doctors working on him were circling his bed before he was rushed back to ER surgery. His shunt was externalized and he was sedated for the remainder of the night due to the ventilator tube. And then we played an excruciating waiting game because we didn't know if the part of the brain that made him Caleb was too damaged to function. His pupils were reacting to light but they were not symmetrical and somewhat erratic. And his extremities would move but it was very disorganized.
I've never been so terrified in my entire life. I've seen him go through more surgeries than anyone I know and there have been many, many worried and sleepless nights.... But Monday was the first time I was TRULY scared I would never talk to him again.
Tuesday morning, he began answering yes or no questions by nodding his head and began to recognize people. Then he started giving thumbs up and waving to his nurses and squeezing hands in response. His eyes were still very confused but slowly, he began to talk around the room again. Once they pulled the ventilator tube and placed him on oxygen, he began to talk!!
He's gotten better and better ever since. Certainly not out of the woods, by any means, but my best friend is still in there!!!! Don't know what type of mental or physical long term damage he may be facing due to the severity of brain swelling but WHATEVER. All I need is him to be him. We can deal with the rest.
As of today, his appetite seems to be resurfacing a little. We have just been informed that PICU is going to release us to the 'step down' unit. His output is still tinged with blood but that is still to be expected. We are looking to head back into neurosurgery around the middle of next week to re-internalize his shunt as long as he continues to improve.
This kid never ceases to amaze us. My little hero, he will be 8 years old on Monday and he holds his head up under strain and pain that would put a grown man on his knees.
Thank you everyone for your continued love, support and concern. You will never know what it means to us
Sunday night, he was very restless and very irritable, but kept angrily insisting to me that he was fine.
Monday morning around 7:00 am, his nurse came in to check on us and i informed her that he has been acting strangely in accordance to his baseline personality. That's when he seized. His left eye went crazy in its socket and his left arm started swinging back and forth. Then, he just went completely vacant. No pupil reaction, no reaction to pain, non-responsive and tachycardia. He was rushed to another unit and given Adavan to stop seizure activity but even after, pupils were completely nonreactive. He began to babble so they rushed him to PICU. Once in PICU, still completely nonresponsive so they decided on another MRI and shunt series x-ray. Once they got him to MRI, he began to prone (which is a frequent indicator of brain damage due to trauma) and turn grey. His oxygen saturation levels dropped into the 70s. He was rushed back to PICU for immediate intubation and shunt tap. His Intra cranial pressure was at 27. It should never go over 10, and it was extremely bloody. It was obvious at this time that he had hemorrhaged sometime Sunday night. At that point they were extremely worried about brain stem herniation which would leave him completely brain dead. It suddenly turned into an episode of House. Twelve doctors working on him were circling his bed before he was rushed back to ER surgery. His shunt was externalized and he was sedated for the remainder of the night due to the ventilator tube. And then we played an excruciating waiting game because we didn't know if the part of the brain that made him Caleb was too damaged to function. His pupils were reacting to light but they were not symmetrical and somewhat erratic. And his extremities would move but it was very disorganized.
I've never been so terrified in my entire life. I've seen him go through more surgeries than anyone I know and there have been many, many worried and sleepless nights.... But Monday was the first time I was TRULY scared I would never talk to him again.
Tuesday morning, he began answering yes or no questions by nodding his head and began to recognize people. Then he started giving thumbs up and waving to his nurses and squeezing hands in response. His eyes were still very confused but slowly, he began to talk around the room again. Once they pulled the ventilator tube and placed him on oxygen, he began to talk!!
He's gotten better and better ever since. Certainly not out of the woods, by any means, but my best friend is still in there!!!! Don't know what type of mental or physical long term damage he may be facing due to the severity of brain swelling but WHATEVER. All I need is him to be him. We can deal with the rest.
As of today, his appetite seems to be resurfacing a little. We have just been informed that PICU is going to release us to the 'step down' unit. His output is still tinged with blood but that is still to be expected. We are looking to head back into neurosurgery around the middle of next week to re-internalize his shunt as long as he continues to improve.
This kid never ceases to amaze us. My little hero, he will be 8 years old on Monday and he holds his head up under strain and pain that would put a grown man on his knees.
Thank you everyone for your continued love, support and concern. You will never know what it means to us
Organizer and beneficiary
Ashleigh K Lynch
Organizer
Myrtle Beach, SC
Alicia Gamble
Beneficiary