Signs of Heart Failure

When Jacob was Diagnoised in Heart and Lung Failure,
my world came crashing down,
I had many Feelings and was very upset ,
mostly with myself.
Jacob's Pediatrician was aware of Jacobs Heart problem
and the Cardiologist kept in close contact about procedures ,
surgeries and overall plans for Jacob ,
including his condition from the Cardiologist Stand Point.
This Particular Pediatrician was also the one
whom I had with Zachary ,
altho he only saw Zachary maybe one time,
he was aware I had lost Zachary to Heart Filure.

I remember when Jacob first was around 4 months old ,
he had symptoms of a bacterial infection,
including a low grade fever ,
I called and told the nurse at the pediatricians office ,
and told her I would like for Jacob to be seen
and that I felt he had an infection of some sort.
I explained that he had diarea ,
spitting up , low grade fever , and I was really worried .
I will never forget the Nurse stating
that I was being paranoid
because I lost another baby to heart disease and I was to over protective.

I was absolutely floored
and angry would be an understatement.
The Nurse and I now screaming back and forth on the telephone,
finally let me bring Jacob in.
Jacob was given antibiotics for his baterial infection.
This nurse did apologise
and never again doubted me when I was concerned .

Since Jacob was born I always felt I had a connection
and felt if I was being paranoid
because I did not want my son to die ,
then so be it.
If I usually felt something was wrong ,
or Jacob needed to be seen ,
I was usually correct, as most moms,
there is that special bond there , and you just know.

Another example that comes to mind
was when Jacob was born,
I remember being at the Ronald McDonald House taking a nap .
One evening from being at the hospital most the day
and planning to return that night,
when Jacob was in the hospital ,
I remained by his side ,
unless I was getting something to eat, or needed sleep.

Anyways I awoke from my nap,
sat straight up in bed ,
my brother a few feet away also napping,
awoke quickly when he saw me ,
and asked what was wrong ,
I told him we had to get over to Jacob right away.

Upon arriving Jacob's bed was behind the nurses station ,
I could see him crying hysterically and his monitor going off,
I ran back there ,
to find no nurse near him,
he had pulled his feeding tube a little
and was wet with formula as the feeding was still going,
he was ok, but if this would have not been caught
he could have got a large amount of formula in his lungs.
The nurse quickly came over
as I was pinching the tube to prevent more formula going thru
and she pulled the tube and turned the feeding off.

Granted this was a larger nursery
and I understand they get busy with other children,
there is almost always something going on in an intensive care unit,
and the nurses were great,
but it was just a feeling again,
I had awoke and knew something was wrong.
I think to some extent all mothers have Feelings
when something is wrong with their children ,
it is that special bond.

I think also when you are around
your children most of the time,
especially stay at home moms ,
there are some things you might be use to with your child ,
that a doctor or stranger might notice quicker.
That is what happened when Jacob was diagnoised
in heart and lung failure,
again I had a feeling but this time,
for the very first time in Jacobs life,
I did not act on it.
I did not notice some of the symptoms and signs.

It was the cold and Flu Season (winter of 99),
Jacob's sibling was dianoised with RSV,
I panicked knowing how serious this could
be for Jacob to catch this with his heart disease,
and immediately took precaution measures,
trying to keep the children apart,
wearing scrubs when holding the other child,
spraying lysol, and good hand washing .
I took the kids for a check up,
and was told Jacob tested negative to RSV,
a sigh of relief ,
but knew tho I was trying to be careful
of exposing the other child to Jacob,
it was nearly impossible.
I mean they were siblings
and live under the same roof.

Jacob began coughing a little here and there,
and had a bit of congestion ,
and I thought he was coming down with a cold,
I took him to the pediatrician
and the first visit,
nothing was done.
Jacob had seen his cardiologist months before
and since she thought he was doing so well ,
did not plan to see him for 6 months.
The next time I took Jacob to the pediatrician ,
he said he thought Jacob had a bit of asthma
and presribed him breathing treatments
that his sibling was getting, Albuteral.

Jacob would go on to see the pediatrician
for follow ups and he would always press his tummy ,
and listen to his heart and lungs,
in the back of my head I felt something was not right
but I think I wanted to believe my Pediatrician
and believe maybe it was a little bit of asthma.
After a few weeks or so of breathing treatments
and numerous visits to the pediatrician ,
I asked his office to make an appointment to the cardiologist,
they said they would,and I knew if i did ,
it would take a few weeks.
I called after his office had forgot to make the appointment,
and of course it would be a few weeks.

By the time to the visit to the Cardiologist ,
all she had to do was feel Jacobs stomach ,
something the local pediatrician did at every visit,
she looked at me as she listened to Jacobs heart
and I just knew something was terribly wrong,
she stated that Jacobs liver was extremely enlarged
and that she wanted to do some more test,
the test confirmed Jacob was in heart and lung failure.

A heart cath was scheduled to have a closer look
at Jacobs veins to his lungs and try to balloon some,
we were told that the microscoptic veins ,
numerous ones were closed,
he would need a heart surgery to try to fix this damage.
The heart surgery was unsucessful,
leaving Jacob's only hope of survival to be a heart and lung transplant.
I remember Jacob having a harder time
coming off the vent this time,
in the past he was able to come off within 2 - 3days ,
this time was over a week.

One evening while Jacob was in ICU ,
he was given albuteral,
the drug in which the pediatrician had me give Jacob at home for asthma,
Jacob immediately had a reaction causing his heart rate
to Jump into the 230's and he had to be shocked out of it,
Oh my God I thought ,
I was giving him this drug at home!!

I remember one day talking to the cardiac surgeron in the hall ,
such a wonderful young man whom was very fond of Jacob,
he had done such wonders and was just amazing to me
and ment a lot, I knew with him ,
Jacob was in the best of care,
he was in the hall and we both stood there for a moment
and he seemed to have tears in his eyes
as he said he was sorry and was afraid Jacob
would not be able to come off the ventalator .

Jacob pulled through and came off the vent,
his strength was just amazing to us all,
Jacob was taken off his Nifedipine(heart med) as the Cardiologist did not think it was doing any good,
I now feel it was keeping him alive.
We were told that Jacob had 6 months to 1 year
to live without a heart/lung transplant.
We were to think about rather we wanted to put Jacob through that.
There was no doubt in my mind
I would do whatever possible to save my son.

As preparations were made to be put on the list,
Jacob passed 2 weeks later.
5 months after his last heart operation,
2 months after his 3rd Birthday.
Jacob also had a wish with the Make a Wish Foundation of Missouri ,
he wanted to go into an Airplane,
he absoulutely loved planes,
Jacob passed 2 weeks before his wish was granted.

I have added this page as I think it is important
that when you feel something is not right with your child ,
never doubt your feelings ,
even if doctors or staff accuse you of being paranoid ,
or even if it is a False Alarm.
I have tremendous feelings of Guilt
for not recognising some of the signs in the beginning,
and doing something sooner
when I suspected that Jacob did not have asthma.
I just knew something was wrong and suspected it was not asthma ,
but a part of me wanted to believe the pediatrician ,
and I did not want my son to be in heart failure.

I am told that I did everything correctly.
I did make an appointment to the Cardiologist 6 months early,
and took Jacob to the Pediatrician consistantly,
but looking back I see that Jacob had some
of the signs of CHF.

It is my impression if Jacob would have been seen sooner ,
he might have had a better chance of survival.
Below you will find some symptoms commonly seen in CHF ,
if your child has any of the Following symptoms
please contact your childs physician or cardiologist,
CHF left untreated can be Fatal:

What is CHF?
Congestive heart failure (CHF) is the inability
of the heart to pump an adequate amount
of blood needed by the body.
When this occurs, there is usually a buildup
of fluid in the body tissues and lungs.
The heart becomes congested with blood.
It does not mean the heart will stop beating.

There are a number of reasons why CHF occurs,
as well as various types of failure and degrees of severity.
In some children CHF may be the first indication of a cardiac disorder.

~Signs and Symptoms of CHF~

* increased heart rate (ask your child's cardiologist what is the normal resting and active heart rate for "your" child--as this will vary with age)

* increased respiratory rate, breathing faster and deeper than normal, breathlessness (again, learn what your child's normal respiratory rate should be)

* irritability, restlessness, an unexplained fussiness

* swelling, puffiness, edema (most noticeable at the hands, feet, or around the eyes; in infants the fontanel or soft spot atop the head may appear to be swollen or bulging. "Water build-up" in newborns and infants can be difficult to detect).

* sudden weight gain or poor weight gain

* decrease in appetite or feeding

* diaphoresis (excessive sweating)

* cough, congestion or wheezing

* a decrease in activity level (tiring more easily or an increase in sleep time), fatigue, listlessness

* decrease in urine output (in infants and toddlers, fewer wet diapers)

* pale, mottled or grayish appearance in skin color