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There was a "bleed"

Monica.TMonica.T Member Posts: 105 ✭✭
25 Likes 10 Comments 5 Awesomes Photogenic
Charlie started out life in a wheelchair but by 1st grade he was walking with a walker, a year later he was 'free' walking. Then in the 5th grade due to his cerebral palsy his left knee cap dislocated and he required a wheelchair for 6 months, when he could walk again he required a walker, his right leg had to bear the majority of his weight that his left leg could no longer support, so he walked with an unbalanced limp. About the same time he was also diagnosed with rapidly progressing scoliosis. Despite all that Charlie remained a very active kid. Because his legs would easily tire we used a simple transport wheelchair if any activity involved walking long distance or being on his feet for hours. Late in 2016 doctors decided he needed surgery for the scoliosis, the curvature of his spine was beginning to effect his lungs, we were sent to Shinners. In June of 2017 Charlie was scheduled for full spine involvement surgery in one of their satellite clinics at the local Children's Hospital. The surgeon told us the surgery would take 7 hours, if it lasted longer than that he would wake Charlie up and finish in a few days, because he didn't want to keep Charlie under to long. June 21st 2017 at 5am Charlie was taken into surgery - 10 hours later the only thing the lady at the surgery center waiting rom desk could tell us was "they said Charlie is doing fine" - 12 hours after the surgery began the doctor came out, took me back into a little room and told me they didn't know what had happened but the monitors indicated that Charlie had lost all feeling in his legs, they were going to undo the lower section of the surgery. I was devastated, when the doctor left the room I fell apart, but pulled myself together enough to go tell my mom and Charlie's big sister what the doctor had said. 2 hours later the doctor came back out. It had been 14 hours since the surgery had begun. He told us they didn't know what had happened, that they were going to stop the surgery, take Charlie to a room and keep him heavily sedated. I collapsed. Later that night tubes had to be placed to let blood drain out of Charlie's surgical site and at the same time they began the first of several blood transfusions. The next morning the surgeon told us they would wait a week and go back in. A week of worry, fear, tears, prayers, begging, pleading for Charlie to be alright, as he lay pale and unmoving, unconscious and in obvious pain. June 28th they took him back in for a 4 hour surgery that lasted a nightmarish 7 hours! 3 days later after a host of x-rays, MRIs and ultrasounds we heard, for the first time, the words : "There was a bleed at the T2 level"  and the doctor began to explain what that meant. Blood had gotten into the spinal cord. They had not been able to spot it because of all the hardware (metal rod and screws) blocked the view of his spine. We wouldn't know the extent of the injury until Charlie's body began to heal ... and due to the extensive nature of the surgery that could take 12-18 months. It would take Charlie 2 months to learn to sit up again. And though he can move his left leg a very little bit, his doctor informed us that Charlie is paralyzed from the waist down. Yet his (new) medical diagnosis is Quadriplegia.  (we are now 20 months post surgery)


  • Monica.TMonica.T Member Posts: 105 ✭✭
    25 Likes 10 Comments 5 Awesomes Photogenic

    For us, in the hospital, after the second surgery, we learned that spinal shock is a deceiving monster, that quite time before the screaming began!  Those few days when you cling to the hope that maybe things aren't so bad, then the pain comes roaring like an unleashed demon.

    We didn't know about spinal shock, no one prepared us for it. Or the storm that followed.

    I think spinal shock is something that should be explained to every SCI patient and their families.

  • bigwave916bigwave916 Member Posts: 15
    10 Comments 5 Likes Name Dropper Photogenic

    I am so sorry for your Charlie and for you and what you are going through. I've been feeling sorry for myself lately and now I'm ashamed of myself for wallowing in my own troubles and despair. I send my thoughts and prayers for Charlie and your family.  

  • Monica.TMonica.T Member Posts: 105 ✭✭
    25 Likes 10 Comments 5 Awesomes Photogenic

    bigwave916 Dave, Thank you ever so much for your prayers. No reason to feel ashamed, despair has a way of overwhelming us all from time to time and it's never an easy thing to pull yourself out of. We'll be praying that you see better days and a smile returns to your face.

    God Bless and comfort you.

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