Hi all
I'm new here and need some advice please. My 15 year old, autistic, mentally handicapped daughter had a spinal fusion from T4 to L3 for neuromuscular scoliosis (64 degree curvature). This was almost 3 weeks ago. How much should she be sitting? How much walking should she be doing? Doc said she should be off school for 6 weeks. Her neck is still to one side. Will this come right or do we need to take her to a physio? We have begun to wean her off the pain meds, but have not been given a lot of guidance about managing her pain, which as you can imagine, is difficult as she does not have speech!! Feel so insecure about managing this huge recovery. She had a fall the other day and had a haematoma on the scar. The doc at the emergency room was not concerned, and although the swelling has gone down, there is still fluid under the wound. That was from a week ago. Not sure whether or not to take her back to the hospital. She does not seem to be in pain or have a temp! I have been fine up till now, but am starting to feel really shaky about this whole thing.
HELP!

Sitting is NEVER good for prolonged times for a spinal patient. Wakiing is GREAT exercise for us, as it strengthen both the legs and the back and it just is healthy all around. Instead of sitting, have her lay back in a recliner with the legs up, or lay down on a couch with pillows under her legs. NEVER let her lay on her stomach as that is a NO-NO for spinal patients!!! If she wants to lay on her side, she MUST have pillows between her knees to keep the spine aligned.

She should also probably have a cervical pillow to help keep her neck stable too. Those can be found at health supply stores. They are "U" shaped and filled with various stuffings.

I would talk to her doctor about physical therapy. I would have thought he would have mentioned that himself! Shame on him for NOT. Give them a call and see what they want to do.

And SHAME on them for NOT giving you any kidn of instructions re: sitting, standing, walkiing. They left you basically uninformed and that's not good at all. They aren't doing their job! I wish you the very best my friend. You have a huge job as it is without all this too. Bless your heart! God bless and keep us posted on her progress will you? Hugs, Lee

HI Leesa
Thank you so much for your response, advice and encouragement, Really needed this info right now. I mad a decision today that tomorrow would be the day to get hold of the physio who advised us in hospital. I must admit that the pillow between the knees has been neglected over the last week or so, so I shall make sure I do this again. it makes perfect sense really. She mostly spends her day lying on alternate sides. We have been for a few walks. The longest being 25 minutes. She manages that fine. The pain is much less today and have cut back on the pain meds further. Basically letting her show me how much pain she is having before I decide how much to give her, but these are much reduced.
Our surgeon, although one of the best in the world, is just the: a surgeon. I have to take Jo back in 6 weeks only! A long time in between to basically mess things up if not given the right guidance. So thanks again. x

As ususal, Lee was right on. She should know...........the hard way. So many of us did not get proper instructions for home care from our surgeons or the discharge summaries. We have learned the hard way and from eachother. I hate the idea that you don't see the surgeon for six weeks post op. Gosh. A 25 minute walk sounds great. As she gets stronger, pick up the pace or consider a second walk later in the day. This is a marathon, not a sprint so take it nice and easy as she can tollerate it. The walking not only strengthens her but as she can walk more aggressively, she will start pumping those endorphins which will improve mood and can reduce pain somewhat. Endorphins are my drug of choice, personally.

If anything comes up that concerns you, call the surgeon's office and keep calling until you talk to him.......not the secy. Trust your gut. You know your child and when "something" is wrong. You don't have to know what that something is. In the meantime, keep coming back here. There are no dumb questions and you can't ask too many. Oh, don't forget the pillows. They really give needed support. I haven't had any major spinal surgery for six years and I still use all of mine as I continue to need the support. I have told my kids to bury me with them. No sense of humor, those girls. Have a good night and take care. Prayers and hugz.

I should have mentioned too that if she DOES get some pain that the meds don't cover, have her use ICE and not heat!! Heat draws blood to the heated area and causes more swelling & pain. Ice reduces swelling & pain. So wrap some ice in a towel and place it on her back for 20 minutes every 2 hours. That should do the trick.

Sorry I forgot about that. I don't know how I could have since ice is my bed buddy. LOL God bless & take care. Hugs, Lee

On the other hand, some of us can not tollerate ice or anything slightly cold due to nerve damage. There are no absolutes or darn few of them. If you ice her, and it's a good idea, and she starts screaming bloody murder, discontinue immediately and forget it. You know your child and can tell the difference between fussing over an ice pack and screaming due to increased pain. Best wishes.