My 14 year old son had an Anterior and Posterior Spinal Fusion for Neuromuscular Scoliosis on July 10th and 24th. His curve was corrected from approximately 123 degrees to 40 degrees. In addition to Scoliosis, he has Spina Bifida (L4-L5), Arnold-Chiari Malformation (Type 2), Syringomyelia, Shunted Hydrocephalus (Right and Left VP Shunts), Autism, TS, OCD, and Developmental Delay (this is the edited list). He has been home now for seven days and I have some concerns regarding pain management and recovery. Upon discharge he was prescribed Tylenol with Codeine (because he does not swallow pills and due to sensory issues will not eat the types of foods pills could be crushed and placed into) and Valium. Unless the medicine is given every four hours his pain is severe (it is prescribed for every 4-6 hours). As the week progressed, I expected at the very least to stretch the medication to every 6-8 hours. Also, he is only sitting up in the hospital bed a few hours a day (he is paraplegic). We finally got a "canvas-type" high-back wheelchair Friday afternoon, but I have not as of yet tried to transfer him into it. Due to his neurobiological needs and sensory issues, I am trying to work at a pace that is good for him as to encourage him to move (sit up), but I am beginning to worry he is not progressing fast enough. I would truly appreciate any shared experiences from other parents who have children similar to my son.
Thank you.
Thank you.
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