March 10, 2023. We will never forget this date. To describe it with a great cliché: what a rollercoaster of emotions!
The day before D-day
Investigations
The day before surgery, some examinations and interviews were scheduled. The physiotherapist, the purple t-shirts, a rehabilitation doctor and the neurosurgeon came by. Both the rehab doctor and the physiotherapist saw the same spontaneous girl as in December. They focused mostly on what will come after surgery. Sit back as soon as possible, try to achieve as much as possible in a week and then head for Leuven. Among the physical specialists, an emissary of Dr. Van Eijsden also stopped by, who performed some neurological tests with Ella-Marie.
Neurosurgeon Pieter Van Eijsden and Janine Ophorst then came a
little later to go over everything again. The warning about the
effect on Ella-Marie, especially the physical limitation, were
emphasized again. We had to prepare for a tough scenario. We were
already aware of this, because on March 6 we were able to speak
again with Hugo and Marjan, Guus' parents. Guus is doing remarkably
well after 4 months of intensive rehabilitation, but the parents
knew only too well what a hell the first days had been.
Regardless, Ella-Marie's fate was in the capable hands of Dr. Van
Eijsden. If anyone could do it, it was him. And that is why we had
"good cheer" about it.
The purple vests (the educational caretakers) are golden. Not
only for the child, but also the parents receive proper guidance. A
photo album explained step by step what was going to happen. We
also got the chance to visit briefly in intensitve care. Until
then, Ella-Marie had really kept very strong. And suddenly it came:
"I don't really want this and I am stressed.
It may sound strange, but it was a relief to see that there was
stress and sadness. Ella-Marie was very aware of what was coming.
And just through that moment, we were able to have another good
talk with her. Why we are doing this, that there really is no other
way, that we can look forward from then on and most of all to try
to get rid of the epilepsy.
After the hospital visit we drove to the Buitenhuis. Once again it was checked that we had everything we needed for a longer stay in the hospital. For Ella-Marie's birthday, family gave us a nice travel bag. Everyone who knows Annelies a little knows that with great precision and five times checked preparation, she had everything ready in that beautiful bag. As a result, we could also quickly look for a restaurant in "De Bilt".
Laughing at a meat croquette
Not far from the outhouse we found a nice little restaurant. There was not much desire to eat, but the awareness of one last time eating something quiet together. The kids opted for a meat croquette and a cheese souffle. Had we taken it out of the wall, it would have been really Dutch. Now it was good Dutch food in an Italian restaurant. It became a pleasant conversation, away from all worries. We talked about the Efteling, home, school, the swimming and dancing club and much more.
Since the following day the rooster was going to crow at 6 in
the morning, we decided to go home on time. There it was perhaps
even the most intimate moment, as Ella-Marie felt it was important
to fall asleep in bed with 4.
Again, there was a lot of talking about everything, outside of the
operation. One of the better moments came, when Ella-Marie said
that the restaurant was not really very good, because she thought
there were very few shrimp in her croquette.... Call it excitement,
call it offloading, call it what you will, but the meat croquette
with no shrimp gave us the chuckles.
Whether she did it on purpose or not, I can't say. But that hug I got when she fell asleep, an arm wrapped around me, was all I needed. No matter how safe and protective we want to make it for her, she always manages to spontaneously go that extra mile.
Just 3 brooding hours later, our eyes fell too. The gates to dreamland remained closed. A final explicit confirmation of why we did it, we received thanks to 2 epileptic seizures during the night.
D-Day
The preparation
6u. The rooster didn't even have to crow, because the focus was already there. A focus that would remain all day. Unlike December 9, when we really had a haze around the whole thing because of the bad news, there was a clear awareness.
Ella-Marie got to choose how to start the day: 100 ml of water,
a little apple juice, water with some sugar or a rocket ice cream.
The result? 2 sisters at 6:30 a.m. cozily licking a frozen sugar
bomb.
Fifteen minutes later, we arrived on the third floor of the
children's hospital. Ella-Marie was put on a special pajama and a
few minutes of cuddling later she was picked up. The four of us
headed for the operating rooms. A first goodbye was a fact, as the
mom and Olivia had to wait at the doors. After an intense hug and
some tears later we drove into the next hallway.
Papa Pieter was given a special suit and was allowed, under the guidance of purple vest Margriet, dressed as a big smurf to accompany him into the operating room. Unlike 5 years ago, there were now only 3 people in the operating room. The anesthesiologists were told that Ella-Marie could not handle anesthesia well, and Dr. Van Eijsden was instructed not to forget the NVS, the vagus nerve stimulator that had been implanted earlier and was now superfluous. Not that the experts needed it, but by sheer focus, the control comes out anyway.
Sleep well Ella-Marie. You will now have a cap around your mouth
which will put you to sleep. I love to see you and hope you will
dream beautiful dreams. Dream of the Efteling, where you can play
with Pardoes. Little Red Riding Hood will also be there and
hopefully also Knight Thomas. Everyone in the family and all the
friends are thinking of you right now. You are going to do well, we
are waiting for you when you wake up.
A kiss on the head, holding back tears and going back out with pure
fear, great faith, all hope and a very small heart. To the mom and
sister, and then going to wait together.
Waiting
One of the hardest things that can happen is waiting in limbo. There is no target time and there is no interim update. What goes through your mind is another rollercoaster of emotions. We knew it was the right choice and we did everything we could to make the right decision.
The plan was to go to a pancake house. Also to go to a museum. The only thing that worked out was in the outhouse doing homework with Olivia and sleeping a lot. It was kind of a decompression from the morning combined with the stress for what was to come.
We got a tremendous amount of messages. It felt good to be able to talk about Ella-Marie from time to time. And in the back of our minds we were always wondering what would happen.
The news
At 3:35 p.m. it was then. The phone rang and I was presented with a Dutch number. Less than a millisecond later, the green button was pressed and on the other end of the line I heard the liberating words, "This is Dr. Van Eijsden. The operation went well". It took a little longer because her Nervus Vagus Stimulator was also taken out. In addition, her brain was at normal size, so the bad side, with the abnormalities, was also very strong. Not obvious to get through this, so there too it took longer than planned.
In a kind of automatism, we took our things and drove to the hospital. An hour later, Ella-Marie drove by for the first time towards the intensive care unit. No tubes or wires, just a huge pink windel around her head showed that she had undergone surgery.
Another few minutes later we were allowed inside ICU. A huge relief, because how exciting it had been! After an hour, Ella-Marie woke up briefly. It was amazing to see how well she could understand us. In addition, she could tell that she had a headache. That was very important for us, because it meant that she understood us and could answer.
When Dr. Van Eijsden was there, she listened very carefully to
the orders. The mouth view is very good and he expects that she
will not have swallowing problems ( so most of that function will
already be in good part of the brain).
Her right arm and leg are doing very well and her left side shows
no reaction.
Everything as expected.
The night
The night in ICU went as could be expected. The positive news was that she was getting brighter and brighter. She talked really well and was able to indicate very well what and where and how.
A drinking test went only half and half the first two times, but then it became clear that the swallowing function was working well. The first eating experiment, however, was not a success at all. A jar of yogurt found its way out much faster than in.
During the night, the hair band was changed twice. About every half hour she was awake only to fall back asleep after a chat.
But what was most important ... no seizures occurred that night! We hope that this may also continue!
March 11
Today is a day to quickly forget. Some vomiting, a lot of pain, blurred vision and an arm and leg that don't want to cooperate.
What is positive though? Still no seizure until now. The hair band and staple in the head are gone. Eating and drinking are getting better. And there is a lot of sleeping.
A new day tomorrow! The first focus is seizure freedom, from Monday the physical rehabilitation starts!