It's scary to contemplate spinal fusion surgery for scoliosis — for anyone, but especially for a child with a neuromuscular disease, for whom there may be special implications.
Here are some suggestions, many of which came from a booklet prepared by Annie Kennedy, MDA Health Care Services Coordinator in Fairfax, Va., in consultation with Katie McGuire, MDA health care services coordinator in Towson, Md. (Jason's HCSC); physical therapist Lee Winemiller (one of Jason's therapists); and physician Jennifer Semel-Concepcion, director of the Department of Physical Medicine at Children's National Medical Center in Washington and a member of the MDA clinic team there.
Get a referral to the right specialist. Discuss with your MDA clinic physician which hospital and physician he or she recommends to do your child's scoliosis surgery and why. Even after a recommendation has been made, don't be shy about asking the new doctor how many children with neuromuscular diseases he has treated surgically. If the number seems small, ask for another recommendation.
Have your MDA clinic physician communicate with both the surgeon and the anesthesia team. Be certain that all the medical personnel, including the anesthesiologist and associates, understand the implications of a neuromuscular disease for spinal surgery. Among the potential problems are excess blood loss, poor wound healing, untoward reactions to anesthesia, and more trouble with respiratory or cardiac complications than would occur in the average scoliosis patient.
Five months after surgery, Jason is back at his computer, but the work station has undergone some changes. A video of how Jason worked before the surgery was helpful in planning for adjustments afterwards.
Discuss pain management. Discuss postoperative pain management with the surgeon. The surgeon should be familiar with the respiratory aspects of neuromuscular disease that may affect the choice of pain strategies.
Familiarize the staff (for example, nurses) with your child's neuromuscular condition by bringing in material from MDA.
Create a video. Your child won't be able to do things in the same way after surgery. The video will provide staff with a better idea of the child's presurgery techniques and activities, and how they can be adapted after surgery.
Examples of things to videotape are: transfers (to bed, commode, wheelchair, car, etc.); eating and drinking (include any special equipment, utensils or straws usually used); using the wheelchair (for example, using the joystick and positioning for comfort and activities); recreational activities, such as video games; doing schoolwork; using a computer or assistive technology; activities of daily living, such as bathing and dressing; and interacting with the physical environment (such as entering the house, entering the bathroom, and how the bedroom, bathroom and other rooms are set up to accommodate equipment).
Store blood. Although the "directed donor" procedure is a bit controversial (many blood banks don't like it), you should talk to your doctor about having relatives and friends donate blood for your child's surgery. The child can donate a certain amount of blood before surgery as well. This blood is then infused back into the patient at the time of the surgery, eliminating fears of unwanted immune reactions to someone else's blood.
Make a hospital attendance schedule. Don't assume that the hospital staff will take adequate care of the patient and monitor him closely. Arrange to have someone with him nearly all the time. On the bright side, hospital stays are shorter than ever.
Physical therapist Michelle LaPlante checks Jason's arm function about a month after surgery. Getting the right therapists to come to the house was a challenge.
Arrange for equipment and services as far ahead as possible. 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. (See "As the Wheel Turns: The Right Equipment.")
You may even have to plan for adaptations to your van to accommodate the new wheelchair or the child's increase in height after surgery. If doctors' prescriptions or authorizations or insurance matters are involved, start early — and keep records of correspondence and phone calls.
Ask your doctor what kinds of physical, occupational or other therapies will be indicated after surgery, and try to arrange for these ahead of time. Make sure — to the best of your ability — that the therapists involved are familiar with your child's neuromuscular disease.
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.
Talk with the school. Adaptations in equipment and scheduling will probably be necessary, as will arranging for temporary home schooling.
Discuss outcomes with your child or young adult. It may be advisable, depending on your child's age and personality, to discuss what his or her capabilities may be after the surgery and possible changes in body contours. In general, people look better after surgery — something that appeals to teen-agers — but they can often do less, at least in the beginning, than they could before surgery.