On Friday, January 20, we received a final proposal for surgery via video call with the neurosurgeon in Utrecht. Any hope we still had was unfortunately not allowed to come true. We will (have to) go for the biggest surgery.
The last hope and last question
We have written several times about neurosurgeon Van Eijsden. Today he and Janine Ophorst were once again ready to assist us with as much explanation and support as possible. On the table was one last question: will it be a full hemispherectomy or will the visual field be spared? As it should be, the bad news was delivered immediately: the only chance for seizure freedom is a complete disconnection of the right hemisphere.
Tough year
Even with the most positive mindset, it is also important to remain rational. Janine was able to tell us clearly what will come our (and especially Ella-Marie's) way . It is really going to be a difficult year both motorically and mentally, where there will be many downs, but where we will try to create as many up's as possible.
The entire right hemisphere of the brain must be taken out,
which will result in massive motor loss. After surgery, Ella-Marie
will wake up with both a paralyzed leg and paralyzed arm. The mouth
will droop to the left, creating the possibility of uncontrolled
salivation from that corner of the mouth. Waking up in itself will
be a very anxious feeling, as she will suddenly feel her body
completely different. There is a good chance for her not to
tolerate hugs on her paralyzed side, as those stimuli are going to
feel very different. You know that feeling of tingling fingers from
the cold? Or the feeling that your leg will cramp up? All those
feelings are possible when you wake up after such a surgery.
The stiffening of the leg and arm will happen gradually. This is
precisely why it is very important to start rehabilitation as soon
as possible. Because both the corner of the mouth, and the leg and
arm can experience (partial) improvements.
Not just gross motor skills
We have to keep in mind that, especially in the beginning, we
approach Ella-Marie through the right side. The left side will no
longer exist for her, so she may be greatly startled if you
"suddenly" appear in front of her. Most people in the same
situation have learned to live with this and will "screen" much
more (move head left and right to observe) on the one hand and
point out where you need to stand to be seen on the other.
Ella-Marie may start to react "differently" because she has to
learn to process some stimuli again. A major behavioral change is
our biggest fear, because obviously we don't want to lose the sweet
girl we have now.
Tough love
Her rehabilitation will depend mostly on perseverance. And that applies not only to Ella-Marie, but also to us and everyone close to Ella-Marie. From day one, we must make sure that she learns to do things herself. Not just offering something, but forcing her to stand up and grab something herself, even if it takes 5 minutes to cover 5 meters. This is the only way she will learn. This is precisely why Prof. Van Eijsden talks about "tough love". By forcing her to do things, she will learn the most. Even if you want to specify everything, let her do it herself.
From March 10 around 8 p.m., the road back up will begin. After +-8 hours of surgery, waking up will be very tough for Ella-Marie, but she will still be here and will get all the care and (tough) love she needs!
