What We have learned...
Compiled by BS Hanson & MJ Purk
Before I start, these are things that we were told to be prepared for and also things that we know now.
Before surgery, talk with the surgeon about having a morphine pump after surgery with a
low dose continously. Don't let your child be in pain. The dose must be low to avoid over sedation due
to respiratory issues, so monitoring is crucial.
Don't assume that the hospital staff will take adequate care of your child and monitor him/her closely.
Arrange to have someone with him/her nearly all the time. There isn't enough staff to be with your child 24/7.
Ask about eating after surgery and feeding. You do NOT want to let them go too long after surgery
without any food (a standard IV does NOT count).
Talk about TPN for a few days if needed. This needs to be decided before hand as it can take
up to 24 hours to get it set up. After spinal fusion, nutrition is important as the
body will rapidly break down muscle and loss of function will occur.
After surgery, your child will come out attached to lots of wires and tubes.
Don't worry, it is normal. Talk to the surgeon before hand to find out what will be hooked
up if you are worried. Also, some kids come out of surgery swollen. During surgery they are
at a downward angle so fluid will collect in the face.
(MJ's face was swollen so much sothat it was hard to tell when she blinked her eyes).
You must discuss with your child that they will be intubated after surgery
(some do get extubated right away, but it is better to be prepared).
You need to talk about how you will get their needs addressed if they are intubated.
Eye blinking, finger spelling, pointing at something....all viable ways to answer questions.
You can make up a sheet of paper with common items (pain, roll over, bathroom, etc on it).
OK, here are somethings that COULD happen after surgery that are fairly common.
First of all, your child may lose head control temporarily. The body is used to the curve being there and over night, they are
straightened out...the curve will still be there in the neck so it will just stay to the direction of the curve.
Don't worry, it will come back (if your child had it before).
Use towel rolls to help aid the neck to adjust to the new position. You have to retrain the neck to the new position.
Second, due to the rapid straightening of the back, be prepared for swallowing problems after surgery.
The body is used to the positioning and curving of the body/esophagus and has to relearn how to swallow again.
It is like starting over with a brand new body. If you think of it this way, the body has been adjusting
to the curve day by day and all of a sudden, it is straightened out over one day, it takes a lot of adjustment!
Third, if your child is potty trained, don't push the issue right away. Again, due to positioning changes,
some sensation is gone or different. Plus due to pain at being moved, it is hard to get comfortable.
Don't be afraid to use diapers for a few weeks until it becomes easier to move. Some kids lose the function
completely while some don't have problems at all....just something to be aware of.
When getting up the first time, make sure that there is a clean pad/cloth behind your child.
We have known several kids who got infections from chairs...
we used disposable chuxs behind MJ to prevent the spread of infection.
The incision needs to be checked daily for any sign of infection.
Also, related to the growth overnight, there could be changes in the ability to feed oneself. Many times, the kids cannot feed
themselves right after surgery. Before surgery, their trunks were much shorter
and they could bend down to get their food. Once surgery is done, they are straight and can no longer do this.
Many times this will come back but if not, there are ways to work around this.
First of all, make sure that the armrests on the power chair are at optimal height....While sitting, bend the arm (at elbow)
to a 90 degree angle....where the elbow sits is where the arm rests should be or higher.
For eating purposes, you may need to build a wooden/plastic box and place it on the table to raise the surface
closer to your child's head (making sure to support the arms too.
Also be prepared for needing a wheelchair adjustment after surgery. MJ grew 6 inches during surgery and
would no longer fit in her chair.
Be prepared for this (it depends on the curve before surgery and how much correction they can achieve).
Not every child grows 6 inches but modifications will be needed - my suggestion, is bring your tool kit with you
so you can make quick modifications while in the hospital if needed. You'll probably need a different
(or at least adapted) wheelchair, possibly a different mattress, and maybe changes in orthoses or other
equipment after the surgery.
Watch for metal detectors. Metal pieces will have been inserted into the spine, which will set off metal detectors,
such as those used at airports. Carry a doctor's note about the surgery to avoid being detained.
Before surgery or after (depending on when it occurs), discussions must be made with the school
and training for such changes must occur. If surgery occurs in the summer,
let the school know asap so that they can schedule training sessions at the beginning of the year.
Also make them aware of any changes that occur in educational needs (higher desk, etc).
Want to know more about spinal fusion for people with neuromuscular disorders? Visit the links below!