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my son with cp is going to have spinal fusion i'm looking 4 advice pls

searching4peace
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Hello all, I am a mom of 4 beautiful kids my second oldest has severe special needs, including spastic quadriplegia, chronic lung disease, trache, gjtube placement, a seizure disorder and last but not least scoliosis. The scoli is the newest of all the diagnosis, we have a spinal fusion scheduled for the 1st of december, my question is how to help him with his pain before and after the surgery, he is in constant pain these days and short of just giving him drugs I'm at a loss for what to do. The dr.s haven't been any help the only thing is to keep him sedated I'm hoping to find a parent with the same situation as me and maybe I can get a lil help/support here.. thanks for reading
Jazz

Explore topics in this discussion:

Surgery Quadriplegia Scoliosis Pain Spinal fusion Ativan

3 replies

AnnMV

Hi, Jazz -- You'll see I sent you a friend request. I can relate to much of what you're going through! I have so many questions, not the least of which is whether you can find a middle ground for your son between using medication to minimize his pain and "keeping him sedated." What doctor is conducting the procedure and where is it going to happen? Does your son see specialists regularly at a local children's hospital?

How in the world do you do it with four?!

Sorry for all the questions! Look forward to getting to know you better and hoping I can be of help. So happy to have you here!!

AnnMV
Cohost/Moderator

purple57chevy

hi I don't have a special needs family member so I might be way off base, but these are my ideas. Have you tried hypnotherapy? How about music? How about a pet? How about pillow, blanket or stuffed animal placement? distractions? A religious leader? I wish you and your family all the best!!!!! As far as my ideas......take them or leave them but I do wish you the best and I hope you keep writing

searching4peace

well lets start by saying that masi's had the same dr.s since birth and they are all specialists except for the pediatrician whos just been the family pediatrician since my oldest was born but he is a fantastic dr. I go to Marybridge Health Center, and He has a Dr. Ricker pulmonology, Dr. Yuwano, GI, Dr. Al-mateen, Neurology, Dr. Rajacich, Orthopedic, Dr. Cooper, Physiologist. and the pediatrician is Dr. Cieri. alot of dr.s and about 15meds between them all..lol.. well to answer the question of pillows pets and music, many pillows including body pillows form to fit pillows and bean bag type of pillowchairs when he's not in his chair. The best thing that helps other than the relaxants is music, but sometimes not even that has helped lately he has been really irritable and crying till his trache is irritated.. I wish that I could figure out what the pain scale is for him, He has been through many surgeries and I don't notice the same type of behaviour I believe that this back, and hip pain is so new to both of us that it scares him and in turn is scaring me. He has such a high tolerance for pain that he rarely cries after a day surgery so i'm just hurting with him.. I want to help him best I could without giving him double muscle relaxers or ativan or diazapam or those things that will relax him but not help the pain.. also I can post about once a day other than that i'm swamped with my momma duties and household chores. Up until August12th I had a fulltime job and actually my mom was helping me with the kids but since the last surgery in August, i've been a full time mom and trust me this is the defination of full time..working was nothing compared to being just a mom, especially a mom to masi my special boy,
I would just love to be the best mom I could be to him and help him as much as I can. we have an appointment tomorrow and i'm going to try and get some answers from the dr. about pain management for him. WISH ME LUCK!

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