Emma's Heart Surgery & Updates
Beginning of April Emma ended up in the hospital
due to pneumonia, while they were dealing with that the doctor noticed
that she had a bad heart murmur and they arranged for a echo cardiogram
in Windsor and sent the results to Ottawa to be read.
April 26th We received a phone call from Emma's
doctors office telling us that we had an appointment at London Sick Kids
Hospital the next day, apparently the doctor from Ottawa had been trying
to get a hold of us but are line was busy every time he tried to call us
so we did not know anything at this time and so were very
shocked because the doctor had not informed us about what was going on.
April 27th We brought Emma to Victoria Hospital in London
Ontario, they ran tests to check her heart and found a hole in her heart
called cor
triatriatum, meaning there is only 3
chambers instead of 4, there is also a membrane
that was suppose to dissolve at seven weeks gestation that did not
dissolve, this membrane only has a small hole through it and is
now blocking the outlet of her heart. Emma is being moved to
The Hospital for Sick Children in Toronto
where is under going open heart surgery to repair her heart, they are
telling us May 5 or 6, we are very optimistic that she will be ok but we
have a long road ahead of us. Emma was also diagnosed with cerebral
palsy but we do not know the extent of her disability as of yet.
April 27th to May4th Emma is treated until they
could get a bed at Toronto Sick Kids. Marie stayed with her there
and I (Gary) went back home to make arrangements for the other kids then
went back up on May 2nd to be with Marie and Emma.
May 4th Emma was transported by ambulance to
Toronto Sick Kids hospital. There she was put through the same test as
London in preparation for her operation.
May 5th Emma developed a fever that morning so
they informed us that the
surgery has been delayed until Friday to make sure she has no infection.
May 7th Again doctors were still not comfortable to
operate and delay the surgery once again until after the week-end to make sure she
does not develop any more fevers.
May 8th - 10th Emma, Marie and I took this time to go to the Ronald
McDonald House where I had been staying and tried to relax for the
week-end. This gave us time to talk to the others staying there. Being
able to talk to others is a good way to relieve some of the stress
because they can give you some insight from their experiences.
Sunday night the Ronald
McDonald house along with American Express put on an awesome mothers day
dinner for everyone there, these people are the best.
May 11th Surgery is scheduled for 8:00am and they
wanted us their for 6:00am, so we were up at 5:00am to walk to the
hospital for 6, it's only about 4 blocks away, our vehicle was parked at
the hospital parking (as you know parking is at premium in Toronto) so
this was the best solution for us. So about 8:00am they called us in to
the O.R. waiting room, their you wait until they are ready to take your
child from you. Prior to going for the operation we had a meeting with
the doctor doing the operation and he explained what he was going to do
and how long it was going to talk, we were told approximately 5 hours
and the only time the would come out before that would be if there were
complications. So off goes Emma with the nurse and we are sent to the
waiting room where the minutes seen like hours. Just under 3 hours had
gone bye and Marie decided that she need to get up and go walk around,
after all she had 2 more hours and waiting anyway. While about 15
minutes after she had gone for her walk the doctor came out to talk to
us (remember only 3 hours went bye) needless to say my heart practically
skipped a beat since they told us that they would only come out early if
there were complications, the doctor took me out into the hallway only
to tell me that the operation was all done and Emma was doing well.
After thanking the doctor I went to find Marie and giver her the good
news she said thank God that she was not there when the doctor came out
she probably would have passed out thinking something had gone wrong.
Now we just had to wait till we could go to recovery to see her. When we
got to the recovery room they told us that Emma had her eyes wide open
when she came out of the O.R. and gave them a smile. Emma continued to
amaze them in the critical care unit (CCU), in just 3 hours she
was off the ventilator and breathing on her own, they told Marie
the average is about 2 days before the kids are off the ventilator.
Later that day they proceeded to remove most of the other tubes from her
body except for the drains and the temporary pacemaker wires. The next
day they moved her to the step down room, but in our case she had to be
put into a isolation room because the patient next to her had RSV and
they could not take a chance incase Emma had it too which could expose
someone else. The first 3 days Emma would not eat anything and she
needed to take in a minimum 400ml in order to go home. The 4 started and
the 5 mom pushed it she went from 300ml to 695ml, Marie had enough and
just wanted to go home. The times we would call and talk to Sarah and
Katie, Sarah would give us the guilt treatment and we could not
take it anymore. So come Sunday we got the good news that we were going
home, we tied up a few loose ends and we were out of there. Many thanks
to the doctors and the staff at London and Toronto Sick for doing such a
great job, it's the only place to be when your child needs critical
care.
May20th Emma had a check up at London sick kids
hospital, she had more x-rays and another echo cardiogram. They showed
that she still had some fluid in her lungs and that the one side of her
heart was still large and the other small. They are keeping her on the
lasix for the fluid and told us to keep her on the PediaSure to
help her gain weight. Her next appointment is in eight weeks. We were
also told that if this surgery did not work the only other thing they
could do is a total heart replacement. So needless to say we are praying
that she improves before her next appointment.
June 15th We were quite concerned with Emma's
appetite, it had been decreasing for the past week and we were having
a hard time feeding her, she also had a bad cough. Two day prior Marie
had called London and told them what was going on, we were told to come
in for a check-up. We went to London, they did a chest x-ray to check on
things. The x-ray revealed that her heart was starting to go back to
normal size and that she only had traces of fluid in her lungs, finally
some good news. Her next appointment is in about a month, at that time
they may take her off the lasix if everything looks ok.
July 22nd Emma went to
London for a check-up, they did an echocardiogram to check her heart and
a chest x-ray to check her lungs. The echocardiogram showed the right
side of her heart is still a bit big but all the vessels are draining
well, they expect her heart to get stronger as time goes on. Her lungs
are also looking good and they decreased her lasix for the next week,
then we can stop it all together. The next challenge is getting her to
eat, she has decided to stop drinking from her bottle, so 99% of her
food is being given to her through her n.g. tube that's in her nose.
They have order an g tube that will go directly into her stomach, this
will stay their until she is stronger and will eat orally again.
October 14th Thank
God Emma finally had her "g" tube installed. After months of having an
temporary "ng" feeding tube in her nose, which she was constantly
pulling out, she was at high risk of aspirating if she were to pull out
the tube during a feed which she did several times. We brought Emma to
London and had her "g" tube installed into her stomach, now her feedings
will go directly into her stomach, this tube is temporary and is going
to be replace with a permanent one in approx. three months. The
temporary one has a tube sticking out of her stomach that she can grab
and it needs to be cleaned to prevent infection so it's a lot of work.
She also needs to be monitored during the night because she has a feed that runs during
the night, she vomits at times so again she's at risk for aspirating, we
are trying to wean her off the night time feeds but this will take
months since her stomach is not use to it. Emma will let us know when
she is ready, she's the one running the show anyway we're just here to
help her along.
January 2005 Emma's
neurologist appointment with Dr. Campbell was a bit easier than Sean's ,
her M.R.I. showed that she had what they call P.V.L., which means that
somewhere along the way she had a bleed in the brain (cerebral palsy)
which caused poor supply to the area of her brain which controls the
motor skills, i.e.. walking , co-ordination, etc. He would not predict
on if he thought she would walk etc.. as he feels it is too soon to
tell. we will just need to take one day at a time. Our next appoint with
Dr. Campbell is in a year, at that time he will reassess her.
March 2005 Emma's had
some set backs, she has not gained any weight since last November, at 17
lbs she's quite a bit under weight. We are questioning cystic fibrosis.
We had to take her to the hospital the other day, she developed
bronchitis and her blood sugar was at 2 (normal is about 7) they were
very surprised that she didn't go into a coma from the low blood sugar.
Now we just have to wait for her test in order to figure out what is
going on. All I can say it's just one day at a time.
May 2005 Emma has gained
only 1 lb since March, she is going to the doctors bi-weekly to be
weighed. We are still waiting to have her check for cystic fibrosis.
Recently she aspirated on something she drank, she now has fluid in her
lungs which we are treating with antibiotics, it's been 2 weeks and we
have seen little change, she may end up in the hospital for a while in
order to clear up her lungs.
November 2005 Sorry I have not updated for a while but things have been quite
busy. Since my last post Emma has been diagnosed with tuberous sclerosis
as well this is very rare since it affects 1 in 6000/10,000 people. We
are not sure where she has them, but the genetics test showed it as well
as a black light test showed white patches on her skin similar to
Sean's. We are continuing with genetics testing and we have switched to
a doctor with more experience with special needs kids. Every day is a
learning experience when it comes to Emma, even the doctors scratch
their heads when they see Emma's medical history. We are still not sure
about the cystic fibrosis, but the genetics testing should give us the
answer for sure.
January 2006
Emma is finally starting to walk, she received a walker
from rehab, she was so excited when her therapist at rehab brought
it into the room, she could not wait to try it out. She loves to use it
around the house she has a grin from ear to ear. We hope that one day
she will not need a walker, but for now it's a good start. Emma is
picking up new words and is also learning sign language.
August 2006 Emma is
continuing to do well, she's had a cardio check-up this year, so far so
good the doctor gave her heart a clean bill of health. Emma continues to
amaze us she is developing new words and her walking is improving. Our
next goal is to get into a house that she can get around, there is no
room in our current home for her get around without bumping into stuff
with her walker.
January 2007 Emma
hasn't had any set backs, although she fell recently in the bathtub and
broke her two front teeth, they had to be repaired it the hospital, we
were a bit on edge but she did well. Emma is now trying to walk without
her walker, she can take a number of steps without falling. Emma is
going to the Shriners hospital in Montreal Quebec for an assessment to
help her with her walking and fine motor skills.
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Pictures
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Inside Toronto Sick Kids Hospital |
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Inside Toronto Sick Kids Hospital |
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Emma's 1st Birthday at Toronto Sick Kids |
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Emma's Birthday at Toronto Sick Kids |
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Emma with some of her gift from Toronto Sick Kids |
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