We are pleased with the outcome.
We were told that there would be the appearance of regressing with the accomplishments we had gained, (head control, etc.) To some extent that is true. It is necessary to work intensively to regain the previous abilities.
One thing that has been a different kind of a problem for us, is that Evan
had a lot of extensor reflex and she used it to reach. The extensor reflex
has been alleviated but now there is a flexion reflex that makes it hard for
her to reach
the way that she used to do.
I have
been told that we will need to strenthen the triceps by having her hold
herself up on her arms, (push-up style). The added strength to the triceps
with help to offset the pulling of the biceps. It is almost like starting
all over. Work, work,
work, whew!
One of the big concerns for the surgery was being fearful of spinal fluid leakage. She had to remain flat for at least a week once we got home. We were a little freaked out, until that time passed and it had healed well. She slept on a twin air mattress in the living room floor (bring home the egg crate foam that will be on the hospital bed, be sure they put one on before he gets back from recovery) and I slept on the couch nearby. That way she could watch her videos and we never had to move her around much.
One thing we seem to notice with the
pump is that she may build a tolerance to the dosage about every two months.
We asked for a
slight increase during her daytime 12 hours (nighttime is fine at the
original dose). That is the fabulous thing with the pump, if you get
them too loose, the medication can be decreased or vice versa.
We believe it was the right thing for us.
Thankfully, Evan did not have nausea
following the surgery. She did have a small seizure the evening of her
surgery. (The only one she's had since last August). I think the seizure
turned out to be a blessing, because she was given Ativan, which knocked her
out until the next afternoon (pretty much, anyway). She then began to get
her sense of humor back.
Prior to going into surgery, she would startle and her arms would fly into
the air while lying on her
back. I had to put her on the stretcher to go into surgery and startling
happened as usual. (That was hard!) She was still stiff and startling
immediately following recovery (it can take 24 to 48 hours for the Baclofen
to get into their system), but by day 2 she could lie relaxed in her hospital
bed. An amazing sight!
It was not a fun thing but necessary.
Best wishes and our prayers are with you.
Sincerely,
Joan