Thursday, November 3, 2011

The story of Nicole's life

For Pulmonary Hypertension Awareness Month I thought that I would write the story of Nicole's life to raise awareness and maybe help someone else.  So here goes... warning.... this is long.

When I found out that I was pregnant with Nicole it was one of the happiest days of my life.  We had tried for seven long years with many tears on my part before I gave it over to God.

I had an uneventful pregnancy except for throwing up every day of it.  I had a sonogram at 12 weeks.  They couldn't tell the sex at that time but I always knew that it was a girl.   I wanted another sonogram but the doctor said that unless it was medically necessary the insurance company wouldn't pay for it.  I really, really felt I needed a sonogram and didn't have peace about it but squashed that.  I should have paid for it myself.

I woke up early on Sept. 23rd and was all wet. I thought I had peed my pants because I was too lazy to get out of bed.  I got cleaned up and went and laid down on the couch a little longer before I had to go to work.  I kept feeling wet though. When Rick woke up he made me call the doctor who told me to go to the hospital.  My water had started to break but I wasn't having any contractions.  When the doctor got there to do an exam is when my water "officially" broke.  They had to induce labor.  Nicole was born 5 weeks premature and while she only weighed 4 lbs. 13 oz., there was no indication that anything was wrong.

In my opinion, it seemed like Nicole was sick a lot and I was always at the doctor's office.  Nicole would always cry and scream when she saw the doctor.  Rick didn't like him either but I was okay with him.  As time went on, I started noticing that he didn't take my concerns seriously  as he thought I was overprotective and paranoid.

Nicole didn't start talking until she was 2 years old.  The doctor was concerned about this and her lack of social skills etc.  When she was three or so he had me take her to the county school district for evaluation.  They determined that she had a speech delay as well as some motor/social skill delays.  It was recommended that I put her in daycare.

Around the time of her fourth birthday I took her to the doctor because she was running a fever again.  When he came in the room Nicole, as always, started crying.  He said to her "what is your problem?  What are you crying for there are a lot of other kids much sicker than you are."  I left his office that day never to return again.

I did put her in daycare against my own gut.  The first faciility I put her in had a few incidents involving Nicole and I didn't like the way they handled it so I took her out.  She was only going a half a day three times a week.  Three days after she started daycare she got strep throat. A couple of weeks later she starting running a fever of close to 105.  She had pneumonia based on a chest x-ray.  She had to get shots in both legs and 10 days later had a follow-up x-ray which showed that the pneumonia was gone.  I told the doctor at this time she had been stuffed up for two days and he said it was probably a cold.  On Aug. 22nd in the middle of the night her fever spiked to 105.6.  I could only get it down to 103.  I called the doctor who told me to go to the ER and have them do a chest x-ray and he would meet us there.  I carried her into the ER.  They took her oxygen saturations level which were 80% which was attributed to her fever and whatever was causing it.  She had double lung bacterial pneumonia.  She was admitted to the hospital where she spent five days on oxygen and antibiotics.  It was at this time that the doctor suggested that I keep her out of daycare.  At this time they also found out that she had a severe allergy to dust mites.  This was something I tried to tell the first doctor but he kept blowing me off.  At six years old she was diagnosed with asthma because of the inflammation they kept seeing in her lungs via chest x-ray.

At seven years old we were seeing a gastroenterologist for constipation issues.  He ordered an endoscopy.  Prior to the procedure they did a CBC (complete blood count) which I don't recall them telling us they  did but I'm sure they told me.  During the procedure itself they did an EKG.  On the report of the endoscopy the technician questioned something.  On the actual EKG print out the cardiologist read it as normal.

At ten years old during the summer between 4th and 5th grade Nicole was attending a day camp at the local high school.  It was during this time that I noticed that she became obsessive with germs and using hand sanitizer.  I took her to a mental health counselor and psychiatrist.  She was diagnosed with generalized anxiety disorder and OCD (obsessive compulsive disorder).  Finally, a reason for the "melt-downs" that she had had over her life for sometimes little things.  She was put on Zoloft.

After she finished 5th grade I started homeschooling her.  She wasn't too happy about this at the beginning but before the year was up she loved it.  I continue to homeschool her to this day and she is now in 11th grade.

I guess it was in 2009 that I really started noticing her purple fingernails even though I believe she has had them for years (even though not one of her many doctors ever mentioned it).  I also noticed her getting colder faster and more often especially in the pool when her lips would turn blue I thought it was from coldness.    I also noticed that she was having a harder time doing physical activity then she usually did.

On January 22, 2010 she was diagnosed with a large VSD which is a congenital heart defect and is basically a hole between the right and left ventricle's of the heart.  She was also diagnosed with Pulmonary Arterial Hypertension which is a rare form of Pulmonary Hypertension.  This was all diagnosed by a cardiologist after the doctor took a pulse ox reading the day before and it read 80% (normal reading should be between 95 - 98%).  Imagine my shock and outrage to find out that she had a heart defect at birth and she was now 15 years old.

She immediately had a heart catherization to confirm the diagnosis.  She had to spend the night in the hospital to monitor vitals after being put on Revatio for her PH.  We were sent home with an overwhelming amount of information as well as oxygen which she would be on at night while she slept and whenever she was home.  We have had so many changes between the medications (she was put on two more PH drugs), oxygen and specialists and just the knowledge of what life will be like for us  as Nicole's parents and for Nicole as a 15 year old.

In Feb. 2011 she was diagnosed with Benign Hypermobility Joint Syndrome which may also be Ehler's - Danlos Syndrome which from the little research I have done is a rare genetic connective tissue disorder.  The only way to get a true EDS diagnosis is with genetic testing.  Unfortunately, this is something else she was born with.  All her life she has suffered from joint pain and I was always told it was "growing pains" but once I got her diagnosis I took her to a rheumatologist as I just don't believe doctor's very much these days.

Sometime after this the cardiologist requested Nicole's records from her former gastroenterologist as she would be seeing another one for continued stomach pain.    It was at this time we "officially" found out that the EKG at seven years old was in fact not normal nor would she ever have a normal EKG.  We also found out about the bloodwork being all over the place and that she had been anemic at that time.  None of this we were told.

Today, our life's are filled with doctor appointments, labwork, medications, oxygen, battles with insurance companies, social security, doctor offices for information etc.  All of these things stem from a diagnosis that we should have known about from birth if not in utero.

Even with the pressures and complications of our life's I love my daughter with all of my being and it doesn't matter whether she is healthy or ill.  I will go through all the tears and the heartache that I must go through just to keep her alive with us.

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