So delightful to hear from you. We are all doing fine. It has been an exciting but rough year so far. I am so happy to hear that Remley is doing well, what a scare. We had our own scare in December our 11 year old had a cardiac arrest while we were in Florida. I was with him, did CPR and got him back. Ends up he had an anomalous right coronary artery that was fixed in January. I am attaching an essay that I wrote about it. The baby is almost 2 and full of life. Doesn't talk much yet but understands everything. Gill is running the DARPA Robotics Challenge and has been incredibly successful making it an international event getting teams from Europe, koura and Japan to participate. See http://roboticschallenge.org/ We visited Japan again in April and continue to love it. I am directing the MGH Weight Center and enjoy my work as a surgeon still very much. See www.weightcenter.org - I am the doctor on the first page. As you can see I have a lot of grey now.
Mom is continuing to study art and has become a wonderful artist. I love her pen and watercolor landscapes. She is really finding her own style. Unfortunately Dad is failing more quickly this year. He can no longer reliably get in and out of a car. He was walking until a few months ago but now can only stand to transfer. He still seems to occasionally get some joy out of life and although he talks very little, occasionally he will come out with something very funny. Somehow despite the advanced alzheimers and parkinson's he still champions on. He has 24 hour care at home, but mom carries the brunt of the work. We make sure that the baby visits at least once a week and I try to stop by once a week but find it very hard to be around dad for long periods. We miss being able to communicate with dad, but sometimes there is a little recognition in his eyes.
We spoke to Marnie a last week and try to keep up with her on a regular basis, I think she is the closest Andrews cousin to Boston.
All in all we consider ourselves very lucky to have 4 healthy children and mom and dad nearby.
We post pictures regularly on google + so anyone who wants to see the family - I have attached a few photos one from Christmas last with all 4 boys Gill and I and the other with dad, Max, Isaac, Ben and Gill at his 50th wedding anniversary in May.
Love to all.
Janey
Time out of Time (draft)
by Janey Pratt.
Friday December 20th,2013. I was getting excited as the speedway came
into view; a huge venue for Gill’s Robotics Challenge Trials that he had been
working on for the last 2 years. He had
250 DARPA employees working for him and 18 teams from all over the world
gathered for this event. It had actually
started that morning and we were arriving at 1pm after a long flight to Florida
and a two hour car ride. I had texted
gill a few times to let him know that we were almost there.
All four boys had come with me to celebrate their Dad’s
event and to see the robots. Jacob, 22yo
was sitting next to me in the front seat, Max, 16yo, Ben 11yo and Isaac 18mo
sat in the back. I called to the boys in
the back to wake up as we were almost there.
Only Ben had been napping after our fast food lunch an hour ago. I heard him moaning, calling out like he
might be nauseated as he woke up. I
asked if he was going to throw up and only heard moaning so I passed a cup back
for him to get sick into.
A minute later Max says:
“Mom, stop the car! There is
something wrong with Ben!” I didn’t
understand, we were almost there, he’s been car sick dozen’s of times. “What?” I say. Max repeats himself and sounds even more
alarmed. Jacob looks back and echo’s
Max. I look back and see Ben drooling,
eyes open but rolled into the back of his head and hands gripping the cup with
a slight tremor. As a physician, I know
that there is something very wrong. Ben
is a healthy child, has bad teeth and had his tonsils and appendix out but that
was all a long time ago. I rack my brain
to understand. Time Stopped.
My instinct says activate EMS as quickly as possible. We are about 100 yards from the first gate of
the speedway. I decide that there must
be a guard at the gate that can get an ambulance. I hit the gas. The boys are protesting, “what are you
doing?” “We need to get the entrance...
there are ambulances in the speedway.”
The DARPA Robotics Challenge was created with a goal to build robots to
help in disaster relief. I know that
there are hundreds of first responders just seconds away.
I pull up to the gate and jump out of the little rental car
and yell at the guard “get an ambulance my son is having a seizure.” He looks confused, turns to walk away then
turns around again and I repeat myself.
He starts to talk on his radio and walk towards us. At this point I feel both panic and calm. My years of teaching BLS and CPR are starting
to kick in.
12 years ago I was at the inaugural ball for a new
college. One of the parents, Mr.
Micheal, collapsed on the dance floor soon after dinner. I remember it was one of the few evenings
that I had left my hair down. There was
another physician and a nurse there. But
I took charge. The physician felt for a
pulse and I checked for breathing. There
were over 200 people there and someone was calling 911. We had no AED, Mr. Micheal was blue, he
wasn’t breathing although occasionally he took a deep breath. I did not understand at the time that this
meant that he was in vfib arrest. The
physician at his head felt a pulse. We
waited on CPR, I began giving rescue breaths.
We learned that he was a diabetic, and thought maybe it was blood sugar.
Finally she lost the pulse and I started CPR. He vomited and aspirated. We continued CPR over 15 minutes before the
ambulance arrived and started to shock him.
He did not make it and was declared at the local hospital. After this event, I decided that there needed
to be AED’s on Campus. I began a program
to teach each freshman CPR and AED use.
A premed student and I applied for a grant from Medtronics to start a
PAD (Public Access Defibrillation) program.
With the grant money we purchased manikins and AED trainers. We got the video training course from the
American Heart Association and with the support of my Hospitals nursing
education program, we began teaching classes.
Today the 50 classes that I had taught, the over 50 times I
had heard the AHA heartsaver video... all came crashing into my brain. I looked around, we were in the middle of the
driveway of the speedway. Max had the
back door of the car open and had Ben out of his seatbelt. Max and I pulled Ben from the car, his body
was limp and heavy, we didn’t expect this and crack went the back of his head
on the pavement as we each held an arm and a leg. I looked at Jacob and said “call your father”
I looked at Max and said “make sure we don’t get run over.” I saw Isaac watching me from the car.
I looked at Ben, he was blue, drool was coming from his
mouth, his neck was swollen and he was not breathing. He looked dead. I was scared.
‘You can’t die, I was scheduling time off next month so we could make
cookies... you can’t die... I need to check for a pulse.’ I thought. I moved to his right side and knelt beside
him just like I had with the manikins many times. I felt for a pulse, I looked for movement...
nothing. I put my hand on his chest, I
knew that I could usually feel his heart beating thru his chest wall. He’s not a big kid for his age, only
75lbs. I felt no heart motion,
nothing... ‘you have to start CPR, should I give breaths first, I remember Mr.
Micheal vomiting and aspirating, Ben ate
a Cheese burger 30 minutes ago, No breaths, just CPR.’ I thought. I began chest compressions.
I think that I was yelling at him, “BEN, WAKE UP... BEN, COME BACK...” I don’t remember. After 60 seconds he coughed and began to
breath. I stopped compressions; I could
feel his heart beating thru his chest wall, strong – about 100 beats per
minute. I rolled him onto his side to protect his airway and kept my right hand
on his heart. I kept talking to him,
“Ben honey, please wake up, come on Ben.”
I became aware of other people around me, Gill and the ambulance. I started to cry a little. I still felt that I was outside of time.
He wasn’t waking up.
I was telling the first responders what happened, telling them about
Ben, healthy kid. They were trying to put in an IV, his first response was
pulling away from the needle, RELIEF....
I racked my brain, why would he have a seizure, he had slipped on the
ice and fallen on the way to the car this morning. I didn’t think that he hit his head, but what
if he had? He moaned when I called his
name now. We were in the ambulance. Homestead hospital is only 5 minutes from the
speedway. We were there in the pediatric
ER in minutes. Then on the CT scanner
minutes after, Ben was still out of it.
I told the story again and again, what happened.
Ben woke up after the scan.
He began complaining that his chest hurt then fell back to sleep. EKG, Bloods, CXR all normal. I felt bad, I had hurt him with the CPR. The Doctors and first responders thought that
he probably had a seizure and probably I had over reacted by doing CPR. I wanted to believe them, somewhere deep down
I didn’t, but I wanted to. They were
very attentive at Homestead, a nurse came in every 10 minutes and we talked to
the attending ED MD several times. After
a few hours Ben was awake and acting normal.
He looked pale but otherwise ok.
He began to complain about being board and wanting to play video games,
Gill and I began to breath again.
They wanted to transfer us to a hospital with a Pediatric
Neurologist. It was Friday afternoon. Miami Children’s had a good reputation so we
went there. We waited in the hall of the
ER for 15 minutes, with Ben on the stretcher, unmonitored. I spoke harshly to the nurses at the front
desk and insisted on a room with a monitor.
We were placed into the trauma room, no nurses or doctors saw us for the
next 5 hours. Eventually Ben was
examined by a 2nd year DO pediatrics resident and then an ER
attending who spent 10 minutes with us.
They prescribed a valium suppository if he had another seizure and
wanted to keep him overnight to maybe see a neurologist and/or cardiologist in
the morning. Ben had come to florida to
see the robots. If we stayed he would
miss them. I wanted to believe he had
just had a seizure...I over reacted. It
was 11pm, we were tired and frustrated.
We decided to take him to the hotel which was next door to Homestead Hospital. We would get a work up in Boston on Monday.
That night I slept next to Ben with my hand on his
heart. No one slept much. The next day we went to the Robotics
Challenge. I brought Ben back to the
hotel several times when he tired out or felt woozy. He was not himself but he was ok. He loved the robots and at the awards
ceremony that night his father was the star.
We flew home the next day, Sunday.
On Monday Ben had an EEG and saw a pediatric neurologist, thanks to a
very attentive fellow at my hospital who arranged this. His EEG showed some night time abnormalities
that they decided could have caused a seizure. They also concluded that I
probably over reacted when I gave CPR. He was started on Kepra. Time started.
December 24th, 2014. I went back to work for the week as did
Gill. Ben was off for school vacation
and hung at home with Max playing video games as usual. Gill asked three of his colleagues who were
neurologists to review Ben’s EEG and listen to my story and give us their
opinion. They all felt that he could
have had a seizure but that the story was odd.
They all recommend we take Ben to a Cardiologist. It was Christmas week, but by Friday, thanks
to a friend with connections, we had an appointment with a pediatric
cardiologist at children’s hospital. He
saw Ben, listened to my story and Max’s story, did an EKG and said, “well, it
may have been a seizure, but I think that a surgeon like yourself could tell
the difference between a seizure and cardiac arrest. I want to get an Echo.”
Time slowed again. Gill
and I were sitting in the room when the Echo, was done. During the Echo, they were looking at something;
two physicians came into the room and looked at the Echo as well. Finally Dr. Ed came back into the room. “Ben has an anomalous right coronary
artery. It comes off of the left aortic
cusp instead of the right. This can
cause cardiac arrest in children his age but can also be completely
benign.” TIME STOPPED.
I don’t know how to describe the next two weeks except that
each day was another doctors visit, or test, another discussion, should this be
fixed or was it just a seizure. Gill and
I were in shock. Max and Jacob were
terrified. Ben was happy to be out of
school and told only to play video games, no exercise. The baby kept saying “uh-oh.” I did not leave Ben’s side, we had a cardiac
monitor that we attached him to at night, he slept in our bed. Everywhere we went we took a defibrillator,
BP cuff and Sat monitor with us. We
still carried the valium suppositories with us too. I took him to school one day and stayed with
him but it was too much for both of us. We
applied for a tutor to keep him from falling behind. I met with one of my colleagues who happened
to be the worlds expert in Right Coronary Anomalies, Dr. Richard spent hours
with me discussing the literature. He
called us several times to help guide us to the final decision. He even drove back to MGH in a snow storm personally
reviewed Ben’s Gaited Cardiac MRI.
Finally after consultation with Dr. Richard, Dr. Ed, Dr. Tom
and several other physicians at children’s and at my hospital it was decided: Ben needed to have this fixed. It was kind of hard imagining coming to any
other conclusion. After living on the
edge these last two weeks, how would we ever be able to just leave him at
school. How could we let him walk to
school or home from school on his own.
How would we sleep at night.
January 14th, 2014. It would mean open heart surgery Dr. Pedro
explained: crack the chest, put him on pump then open the aorta and unroof the
right coronary artery. The repair was similar to a Puestow procedure on the
pancreas, an operation that I was familiar with. I was having vivid memories of Ben lying dead
on the pavement. Now I was sitting in
the waiting room next to Gill at children’s hospital, waiting for Dr. Del Nido
to come give us the news. He kept us up
to date during the procedure. Ben is
asleep, Ben is going on pump, Ben is off pump, and surgery is done. Being a surgeon does not help when your own
child is having high risk surgery. Dr. Pedro
was kind and honest when he spoke to use about the surgery. Everything had gone
well.
In the ICU Ben was still asleep, on a ventilator with tubes
in his mouth and his chest. He looked ok
though. He was still cool from the OR
but warming up quickly. We were tired, we had not slept in weeks, and we
decided to go home after the night nurse assured us that he would be kept
asleep till morning. We were home 2
hours when they called to let us know that Ben was waking up. At 1am we raced back to the hospital to be
there when they extubated him. He was
awake and did not like having the tubes in.
It was so good to see him eyes open, he was alive, and the rest didn’t
seem to matter.
It would be only five days in the hospital before we went
home. Ben received hundreds of cards and
notes from his class mates. His aunt and
uncle came up to visit him. His
grandmother came in to see him and our best friends brought us food and
friendship. We took turns sleeping in
his room. There were red socks players
and Ben met a boy his age who was waiting for a heart transplant, we felt
blessed. The worst was behind us but
time still stood still.
I was surprised that
he was on so many medications when we went home, asprin, keppra, lasix, motrin,
iron... my healthy child less than a month ago... what happened. Ben came home I don’t remember what we did
for the next few weeks, I wasn’t working, Ben did not have school, I think we
watched a lot of movies. I made
cookies. We all began to heal. I don’t think that time started again for
several months. It was a while before I
could leave Ben and come home not worried that something had happened. Ben returned to school, I returned to
work. His brothers settled down and
began to act normally again. Gill went back to commuting back and forth to
Washington and Tokyo.
The first few days Ben went to school I would get a call about
midday from nurse Barbara, Ben was tired or had chest pain (usually from the
healing bones and cartilage). About two
weeks after returning to school I was just finishing a presentation when I got
a page from the nurse – “Ben is having same pain he had in florida, and trouble
breathing, I am calling ambulance.” I
read my beeper, looked at the audience, said “I’m sorry I have to go” and ran
out the door. The place I was talking
was only 10 minutes from his school. I
made it just as they were rolling him out in the stretcher. I jumped in and we went down town to
children’s. The medical work up was
punctuated by a misread on the Chest xray of a pneumothorax, it was the edge of
the spleen. After a few hours and
speaking to gill we managed to make the diagnosis – “malingering…wanted to get
out of English class.” We did not go
back to children’s until his three month check up. Somewhere in there, time started again,
slowly.
June, 16th, 2014.
Today is Ben’s 12th birthday. I have reflected for 6 months
on the past winter. The survival rate of
a cardiac arrest in a child is 5%. The
chance of Ben having a cardiac arrest while I was with him was only about 10%. If you believe in a god, then we were blessed. If you don’t believe in a god then you must
believe that the universe is an amazing place to allow Ben to live when all of
the odds were against him. Or perhaps it
is simply a miracle. To me it really
doesn’t matter, what I know is that Ben is a happy healthy amazing kid and we
as a family are blessed to still have him with us.
Everything returned to “normal” time continues now but I
know that someday there will be another time out of time. Life perhaps is about enjoying the time we
have and being there for the ones we love when time stops. It is about today and now not tomorrow or
next week.
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