Thursday, Dec. 8, 2022. A weekday, with many people pondering what packages to purchase for Christmas and New Year's again this year. We had purchased everything in advance, as our focus was on something completely different: surgery. Unfortunately, the day did not go as expected.
Yet something else
The UMC in Utrecht works a little differently than the UZ in
Leuven. The hospital in Leuven is big, the hospital in Utrecht is a
city in itself. On Wednesday, Ella-Marie had been assigned a room
with 3 other children. Not really optimal, because the nightly
attacks wake up other children and you feel the stares of the other
parents. Those stares are filled with fatigue, sadness, annoyance,
questions and sadness. So, although we had communicated several
times that a single room was by far the best option for Ella-Marie,
we did not get one.
Fortunately, we were given the option of going to the outhouse, the
overnight parent's home, with our daughter in the evening.
Ella-Marie's hospital bed on the 3rd floor remained empty and we
were able to keep our girl, the nights before surgery, a little
closer to us.
Only one MRI today
Both Wednesday and Thursday were completely scheduled. And we were lucky, because Wednesday was super busy, but today was a very quiet day. Ella-Marie only had to go under the MRI once, we got a visit from the neurosurgeon, and someone went to have another "chat" with us to find out how we wanted our guidance during the surgery. After a leisurely breakfast, we drove to the UMC by 11 am. The unoccupied bed awaited us. Other than a tablet and some reading books, nothing was unloaded from the backpack.
Patience is a virtue
If you have ever ended up in a hospital, you know one thing with
certainty. People who work in healthcare deserve several gold
medals at once. One for the knowledge they have, another for the
speed with which they have to execute things, one for their eternal
smile and at least 2 at a time for the workload they have to deal
with. Unfortunately, the physical hindrance of these medals would
rather cause functional problems, so we stick to a regular (but
sincere) "thank you for the help."
Today was another such day. Every bed was full, everyone had to be
helped at the same time, stickers in the right place and blood
draws on the littlest among us became almost band work. And yet a
friendly nurse found some time to accompany us to the MRI around 2
p.m. In a city like the UMC, the pedometer on our wrist is only too
happy to work. From the hospital bed to the MRI, through a maze of
underground corridors, we were counted about 2,000 steps. And even
here, the nurse also needed a GPS for a while, as MRI room 5 was
not immediately found.
Technology at its finest
Hey Ella-Marie, what do you like? "The Efteling." Well great,
then we are going to find movies and songs from the Efteling so you
stay nice and still. Okay?
15 minutes later Ella-Marie was under the scanner. Daddy Pieter was
allowed to sit behind the scanner and through a mirror Ella-Marie
could watch TV. Little Red Riding Hood, Dream Resort and Villa
Volta did their work, while an automatic computer voice managed to
tell us to expect a scan of 30 seconds, 3 minutes and another 6
minutes, respectively.
Half an hour after we had outed ourselves as Efteling fans, images
of the brain were generated.
Neurosurgeon (Part 1)
With untold respect, we always look up to the neurosurgeon Prof.
Van Eijsden. Down to earth, but oh so intelligent. In better times
you would love to have a drink with him, now we were especially
looking forward to his vision for "D-day." And we got good news,
because the "minor" surgery was only going to take a few hours.
With less discomfort than after abdominal surgery, Ella-Marie went
awake. The left arm was no longer going to function, but our new
life without epilepsy could begin.
After exchanging some soccer wisdom (World Cup as you know...), a
firm (but not too firm, as everything must still function)
handshake and a "good luck for tomorrow" message, he was off
again.
We went to talk a little more with "the persons in the purple
suits," they are from the "Medical Educational Care". They are not
doctors or nurses, but make sure that each child feels as well as
possible and that the parents receive the necessary guidance. After
some questions, we were allowed to go to our outdoor home.
Belgian fries, what else?
By 5 p.m. we arrived at the country house. A friendly attendant is happy to help us when we ask where there are restaurants nearby. It is already dark, but since it is only a kilometer away, we go to the restaurant on foot. As of tomorrow it will be hospital bed for a while, so we stretch our legs for one last time. "Daddy, what are we going to eat?" Deep inside, a voice tells me she deserves a few pounds of candy, chips and other cholesterol-rich foods. But as difficult as it sometimes is, a parental duty is to raise a child, so I say briskly, "Shall we go for a nice salad?" It is dark, but the street lights show 2 bright blue eyes looking at me. A few inches below, a mouth moves, where even more briskly "um, I was thinking of fries" comes out.
We arrive first at the restaurant. A friendly lady assigns us a seat and we order our drinks. A few minutes later there are 2 Coke Zeros and a flat water in front of us. And just then the phone rings.
Neurosurgeon (Part 2)
Whether we were still at the hospital? No, unfortunately not.
And if we could still come to the hospital? Of course we could.
We don't have such good news. The scans are just in and we have
seen with all the experts together that Ella-Marie's brain is
continuing to break down. There is no point in having the surgery
because it wouldn't make any difference at all. When you come to
the hospital, we will show everything on video.
"Apologies ma'am, but we just got some bad news. We are going to have to leave your place already". Quickly put way too much money on the table, take Ella-Marie on the back and run to our car.
6 p.m., the city has already partially gone to sleep. Outside it is dark, but upon entering the lighted entrance hall, everything still seems a blur. Arriving on floor 3, we get puzzled looks at the reception desk. No, we didn't forget anything, but got a call from the prof. Whether they could call him and tell him we had arrived? They could and a few minutes later Ella-Marie was allowed to stay with the nurses and we were taken to a small room apart.
The images were clear, so were the explanations. And yet you are
left with a thousand and some questions.
Why are we only getting this news now? "Unprecedented disease."
Is our child going to die? "No, but drastic intervention is
needed"
So what happens tomorrow? "That depends on you"
(Little) Time for advice
The prof needed time himself. We agreed to meet 2 hours later to make a decision what to do the next morning. We took advantage of the time to go see Ella-Marie. In the ward playroom, we explained to her in child's language what the bad news meant. Just two years ago she had looked straight into our eyes and said, "please make me stop twitching Daddy, I'm so tired." Now we had to explain that stopping trembling would mean paralyzing the entire left side. And again came a very honest answer to the question of whether we should go ahead with the surgery: "I don't really know all that well anymore".
In times of need you always go back to basics. In the most rational way possible, we first call Grandma and Grandpa. We explain everything to them and want their opinion. At that moment, a first crack appeared in that oh-so-thick, rational wall. A wall necessary to get through everything. A wall that caused both the negative, but unfortunately sometimes the positive feelings to be flattened. "It's really bad news, sorry about that. But she's here in front of me and ... we still have her with us". We cough away the crop in the throat, flip the emotion switch off and listen to the advice of people who raised us.
The grandma and grandpa, together with Simonne babysitting Olivia at the time, were also informed. There too, the same dejection. But also there the perfect answer to our question: what would you do? "Annelies and Pieter, we don't know what is best either. But whatever you decide, know that we will always be there for you."
A sweet mother's heart versus a rational father's mind
The nurse comes to ask if we would like to go to a private parents' room for a moment. Until now, other parents who could get coffee or water in the playroom had been very discreet. Still, it is better to really have a space apart, where the three of us can talk. We walk from one half of town to the other and enter the parents' room. Once inside, the cracks in the wall tear harder. Fatigue, stress, yet another sledgehammer blow do their work. Ella-Marie's heartfelt hug puts a plaster on the cracks in the wall. And because time is short, we juxtapose rationality and love.
Rationality and pure facts make it very simple: Every day we
wait longer is a day less of rehabilitation. We have already had to
wait six months to get a date fixed, what will it give if we have
to wait again? And that defect keeps growing too, so what is that
going to do to Ella-Marie in a few weeks or months?
But we promised Ella-Marie that she would not end up in a
wheelchair. We told her that she would still be able to dance. That
she could go into the New Year already jumping, and that she could
celebrate her birthday in February while walking. By going ahead
with the major surgery anyway, it felt like we were breaking our
word to Ella-Marie.
Decision: We postponed the major surgery and started working with professionals (psychologist, doctors, architects, building experts, ...) as soon as possible. Meanwhile, the prof had also called several experts and was back after an hour. Nice to see that the human aspect also plays a role here. Because the explanation we had worked out, we also got confirmation from the neurosurgeon.
Going home as soon as possible
Eight o'clock in the evening, we leave the city and drive to the
country house. Actually, we want to pack up as soon as possible and
go home to sleep. For various reasons, it's not really smart to get
behind the wheel now. And the next day we get additional
explanations from a neuro-expert. The packing can already start and
in the meantime we give the final decision to the grandparents. The
kind messages we have already received from the immediate family
let us know that it is best that we inform everyone as soon as
possible. A lot flashes through our heads: Oh no, so many people
have put in so much effort and now we have to give bad news.
A short message later, we close the laptop and phone.
It's 9 p.m. The eyes close amazingly fast. Even dreamland has closed. A dark night later, we begin Ella-Marie's follow-up story. Focused on well-being and quality of life.