Delphine "my battle…"
Wednesday, July 13th 2005
2:30pm,
After ten days at home, you just finished your first day back at work.
You want to enjoy this beautiful summer afternoon, coming to see us and having a swim in your inflatable swimming pool in our yard.
5:45pm,
I am back home, and I am surprised by the position of your body laying on the grass. I came toward you to wake you up. Your body is inert and your eyes are absent.
Mommy calls our local doctor…
My cry for help is heard by our neighbor (François), who ran toward us immediately. I am starting to do mouth to mouth…
François is doing the heart massage, and guides me through my too strong insufflations.
The ambulance and the fire department are called and we say: ‘cardiac arrest, and no breathing!’
(the fire department in France are trained to help people in this kind of situation)
5:50pm,
Our local doctor just arrives and replaces me.
François keeps massaging, counting: ‘15 massages, and 2 insufflations…’
6:00pm,
Already, we can hear the sirens from the ambulance in our village, here are the fire department and their equipment to replace us.
Already the first wires are placed on your body, the rescuers are using the electric choc, but in vain, your heart is still sleeping…
6:05pm,
The men from the ambulance come near you, and our doctor gives us his first statements.
Watch out! We need to pull back again, as the second defibrillator comes into action now. We need to wait for the eighth electric choc before the printer from the ambulance shows and hears the perfect pounding of your heart…
That’s wonderful, you’re back again, and it is 6:21pm!
They ran some tests on your body, they gently tapped on your upper arms and on your knees and each time, a small reaction is recorded – weak, but existent.
A special machine envelops your body, my eyes are too watery because you are heading to the hospital.
9:10pm,
When we get to the hospital, we are asked to wait because you are having a scan.
10:30pm,
The neurological exam doesn’t allow us to say much, we don’t know yet how much time between your cardiac arrest and the first moments that the oxygen went back to your brain.
We are aware that after three minutes…
They tell us that your body will be in a state of hibernation at around 33° Celsius for 24 hours, then after that cold phase, you will need a twenty-four hour warm-up phase.
Everything you are going through is to protect your genitals, kidney, and brain…
We will need to wait 48 hours to know which way you will go.
Thursday, July 14th
2:30pm,
Near you, they put a respiratory machine. A big pipe goes inside your trachea artery and it is connected to the machine that helps you breath.
When we touch you, we feel the cold that wraps you up…
With the tape that they put on your eyes, you look more relaxed.
Several radar screens continuously monitor the cardiac, respiratory, and temperature status of your body.
Friday, July 15th
8:15am,
I just talked to Unit 81 of the hospital, who told me that your body just went into a warm-up phase.
They gave you some medicine to regulate your cardiac pulses, due to the hibernation process that you are now going through.
2:30pm,
Our faces are getting more relaxed when we learn that you are in the wake-up phase - it’s wonderful!
We are talking to you, and I know that you hear us, but you can’t express yourself. Besides, your respiratory pipes are still in place, and they prevent you from answering us…
You open and close your eyes, and you follow us with your eyes… your 90 cardiac pulses reach 130 and more…
Your hand and your left arm are shaking when you get frustrated…
You went through some tests, and you are responding well…
We met with Doctor X, and she is giving us hope. She talks about ‘miraculous behavior’ when she sees results from new tests, compared to the old ones which were pretty catastrophic.
We know now that you didn’t stay long during your cardiac arrest, less than 5 minutes.
They confirm us that you went through a sudden death from a healthy heart!
They still need to determine what happened?
According to your electrocardiogram study, they think that it’s genetic.
Maybe the ‘QT-long’, a gene detected since 2002!
A screening will be done on your brother David, mommy and me later on…
It is a rare disease that researchers have recently gained interest in understanding.
We are leaving a little bit more assured, we overcame another step.
Saturday, July 16th
3:00pm,
Only two people can be near you at a time. It’s a miracle, you are talking to us.
Your first smiles mean so much to us.
We are noticing that you are going through “frontal” memory losses and you are hiding your left arm under your bottom. We know that you have a problem on a side of your arm and left hand.
You want to know everything, our explanations surprise you sometimes, and your previous memory seems intact to us.
Often we notice that you forget the answer given to your previous question. It’s normal, you need more time.
Your voice is weak and your lips are damaged by the pipes of the respiratory machine removed at 1:00pm. We stayed with you from 3:15pm to 6:40pm.
At the end of the afternoon, you seem disconnected, and you don’t smile! We tired you too much.
Sunday, July 17th
2:30pm,
You look calmer to us, more relaxed, especially during the first hour.
Your left arm shakes less than previously, and your statements are more coherent…
The nurse puts a gastric catheter in your nose to protect your trachea and to feed you!
Not a smile from you today.
You are getting tired, so we need to leave you in peace.
You will try to get out of your bed, but they will attach you again.
Monday, July 18th
3:15pm,
Doctor X. gives us a complete update on your situation:
Still some frontal memory problems!
For the side of your left arm, she thinks that you will need some physiotherapy sessions because you had a small cerebral accident.
After the results of your electrocardiogram, the doctor confirms to us that there’s a 95% chance that you were victim of a rare genetic disease called the QT-long. Also, she tells us that your electroencephalogram is almost normal and that a defibrillator will be put under your skin in a few days.
Tuesday, July 19th
3:00pm,
Just before we see you, we met with a new nurse who tells us the latest status of your health. She is happy with your progress and she thinks that you will depart from the cardio department in a few days…
They removed your gastric catheter. Your speech is getting better and better. We start to laugh together.
Wednesday, July 20th
10:00pm,
The hospital informs me that you are going to move to the cardio unit for intensive care. In entering this new space, the cardio unit seems less noisy than the resuscitation unit…
Already in your room, you seem relaxed in this new bed without the pipes that were assisting you.
Now you drink with a straw, but your throat is scratchy.
Tonight, it has been a week.
Your surgery to put in a defibrillator is planned for next week.
We leave the hospital around 8:00pm.
Thursday, July 21st
1:00pm
,
You are forcing your arm and your left hand to work.
Both of us, we play to the game ‘question-answer’, to remember simple things such as the type and the color of your car? Or for how long have you had it? What day is it today?
We need to help make your frontal memory work…
The phone in your room just rang, and a girlfriend is talking at the end of the line…
You would like to go out outside in the sun, but you are struggling to understand that the sensors located on your body, with the function of checking your heart, have short wires…
6:35pm, we are leaving you, and you seem a little bit tired.
Friday, July 22nd
3:10pm,
At the hospital, they are running a test on the electrocardiogram on David, mom and me to detect the QT long.
On the way back, in the front of your door, there is a complete surprise waiting for us: you are walking toward your chair!!! Tomorrow, you are moving to a different room, but this time in the classic surveillance and still in the cardio sector. Your departure is planned for the end of this month!
Saturday, July 23rd
3:30pm,
You start to understand what happened to you, and you are still confident that next Wednesday will be the big day: the implant of your defibrillator.
In your room, you eat alone, and you can get up out of your bed to go to the bathroom. It’s always difficult to move around with a perfusion on wheels. And like you said: ‘I walk like a duck.’
Sunday, July 24th
12:00pm,
Mom and I are joining you in your room to have lunch together.
You gobbled everything from your lunch tray.
You eat with your left arm, and your hand doesn’t shake anymore.
Your memory is constantly challenged by our questions.
Your answers become more precise.
You don’t hesitate to motivate mom, you are more positive and it’s great…
The next week’s plan is busy: a specialist from a rehabilitation center is going to observe you and plan some rehabilitation sessions for you.
Monday, July 25th
12:00pm,
Like yesterday, the food from your lunch tray was gobbled.
We feel that you are encaged here in this environment.
Tuesday, July 26th
1:30pm,
We learned that the MIR of your heart indicates no complications/lesions.
You walked with me in the corridor to show me that you could walk alone. We learned that tomorrow you are having the surgery at 1:30pm.
Wednesday, July 27th
4:00pm,
From the phone of your bedroom, it’s you that answers it.
With a soft voice, you say to me: ‘the surgery went well…’
5:00pm,
Again, we find ourselves around you, and you look healthy.
This surgery immobilizes your left shoulder, your arm and your left hand, which don’t seem to bug you anymore.
Mom met with the cardiologist who has the Friday, July 22nd electrocardiogram. It appears as though the results were inconclusive. Delphine is actually going through more precise tests.
A few minutes later, the cardiologist gave us the results.
Mom seems to be the carrier of the QT-long gene.
For prevention, other blood work will be done for genetic analysis in the following months…
Your same medicine called ‘Detensiel 10mg’ will be prescribed for Mom. ½ per day for life…!
Now that you know that you are leaving this weekend, you are in a very good mood.
Thursday, July 28th
3:00pm,
After the visit of the physiotherapist, he thinks that a few sessions will be enough.
4:00pm,
I am next to you, and finally they removed your perfusion, and you are delighted because you are leaving tomorrow, on Friday. Not a temporary pass, but for good.
From observing you, we notice that you use your left arm more and more.
We are all surprised to see how much progress you’ve made with this left arm.
Now, you need to work on your walking.
Like you said: ‘I walk like a duck,’ but the physiotherapist will work on your balance.
Your memory comes back slowly, and soon you will see a neurologist…
Friday, July 29th
12:00pm,
You are finally ready for your big day…
They will be giving you some documents explaining what NOT to do with your defibrillator.
You are relieved that the doctor reassures you that you will be able to have kids some day.
At the same time, they give mom and me a list of incompatible medicines with the beta-blockers.’
They gave mom some info related to the genetic disease…
It’s at Nantes where they will be dealing with the follow-up.
They wrote down the next appointment dates for check ups.
It’s time to go, and you finally leave the third floor like the bird from its nest, flying toward the unknown. You surprise yourself every day by doing simple things that you were not capable to do the day before.
Today, Wednesday, August 17th, I am finishing my journal.
You are in front of me, in the pool, and it is the first time that you are swimming since the day that you came back from the hospital!
Today, Delphine, you won the biggest battle of your life…
Delphine, health aid in a psychological center for disabled people, has resumed her work, part-time for therapy in November 2005.
Sample of her dad’s journal during her hospitalization…
Our contact is:plandreau@club-internet.fr
-Last update-august 29 2008-
