January 22, 2010

This post is part of the #Blog4Care blog carnival being hosted by Caring Across Generations. We're hoping that by sharing our caregiving stories, we can begin to come up with solutions to the care crisis that is affecting millions of Americans.

Four years ago today we took Nicole to a cardiologist due to low oxygen saturation levels.  I never, ever thought that we would hear that she had been born with a major heart defect.  We were told that she had a large (2.8 cm) hole (along with several other smaller ones) in the lower chamber of the heart this is called a ventricular septal defect (VSD).  She also had a patent foramen ovale (PFO) that is like a intermittent flap in the atrium (top part of the heart).  Sometimes it is also called an atrial septal defect (ASD).  Due to the lack of diagnosis of these two heart defects she developed Eisenmenger's syndrome (reverse shunting of the heart) and severe pulmonary hypertension.

I remember sitting in the office like it was yesterday after being told all of this.  It is like being kicked in the chest and you can't get any air.   We had believed that Nicole was healthy up to this point even though she was always sick, didn't gain weight, had anxiety issues, etc. etc.  It was also a blow to the future... everything you want for your child evaporated that day.  I don't think it was this initial visit but it was shortly after anyway that we were told she would never be able to get pregnant and have a child of her own.  She would also need at least a lung transplant with her heart issues being up in the air as to repair/transplant.

I remember coming home and googling pulmonary hypertension.... bad mistake... what I found literally scared the shit out of me (excuse my language) and I literally had nightmares.  It was six months before I would find PHA (Pulmonary Hypertension Association).

It would be a lie to say that this has been an easy journey.  For  the first two years at least I would wake up every morning thinking this was all a nightmare until I realized it wasn't a nightmare with the humming of the oxygen concentrator.  Now I just wake up and ask what day is it today and what do we have to do.

If you are a caregiver, you know the stress that comes with this.  If you are a caregiver and a parent to a chronically ill child that is also incurable  I think that adds a little bit more stress.  I have constant worry about Nicole.  If I go shopping etc. and leave her home alone I worry about her and pray that she is okay.  I worry about her future and that she will mentally, physically, and emotionally be able to come to terms with this as best as she can.  Every morning as soon as I get up I peak into her room and watch her to make sure she is still breathing.  I have tried very hard the past few months to not do this but even as I sit here writing this the urge to go check on her is so strong and it probably would cause me a lot less anxiety if I just went and checked on her.  The worry never, ever stops with this disease that can take a turn for the worse at any moment.  This time of year is worst because of flu season.  I was out having coffee with my friend the other night and one of the waiters went past our table and said hi and grabbed my hand and I immediately used hand sanitizer.  Even though Nicole and I both have had our flu shots if Nicole was to get the flu she would have an immediate pass to the hospital and quite frankly any type of respiratory infection could be deadly for her.  I pray everyday that she won't be  running a fever  etc.

I'm not sure if I will ever fully come to terms with this.  This isn't where I saw my life or Nicole's life four years ago.  I have come to terms with the fact that she was born with a congenital heart defect  as it is the number one  birth defect which, unfortunately, I didn't know in 1994.  I blame myself in a lot of ways because I didn't listen to my gut and my instinct and just "trusted" the doctors who all said she was perfectly healthy.  How do you come to terms with your daughter's whole life being a lie so to speak?

I have come a long way with the anger and negative emotions I have toward the pediatrician that Nicole had until she was four years old and the doctor who read her EKG wrong when she was six and even the pulmonologist that misdiagnosed her with asthma at seven years old.  Will I ever truly get passed it... I don't think so... I do the best that I can though because no matter how much I fight it and try to rationalize it the facts will not change.  Nicole fights everyday just to breathe and I find everyday for awareness of a disease that has taken so many lives that people have never heard of just like I had never heard of it.

Even though the last four years have been hard and this is just from my perspective and I know it is much, much harder for Nicole to actually have to live it.  There have been many, many blessings along the way.  We have met some awesome people and have made some awesome friends that we would never have had the chance to meet if it wasn't for Nicole's illness.  I truly believe that God gave Nicole her gift as an artist to compensate for her not being able to run and play and jump like other children. We have also had to learn along the way who are true friends really are because when you have a crisis of any kind people tend to scatter.

I have learned that I can hopefully use my big mouth for good and to help others with this disease or to raise awareness for pulmonary hypertension, for congenital heart defects and having newborns tested for them, and for the importance of organ donation  and to be an advocate for Nicole.

I will always speak out to raise awareness for PH as well as other rare diseases that don't get any recognition.  I will always, always be here for Nicole as long as there is breath in my body and I will always speak on her behalf and be an advocate for her.   I will always (or at least do my very, very best) to keep the faith and to have hope that one day there will be a cure for this disease and Nicole will be healthy.  I ultimately know that even though the doctor's hold her life in their hands in a lot of ways her fate is up to God and nobody else.  God has a great future planned for Nicole whether she struggles everyday with a debilitating lung disease or whether she is healthy.

I am so proud of the young lady Nicole has become and how she has dealt with these issues for the last four years.  She is an inspiration to me everyday and I have learned so many things from her.  She is the greatest love of my life.

My deepest wish (other than a cure) is for Nicole to realize just how special she is ... just how much courage she has... just how strong she is.  I wish that she wouldn't allow other people to tell her what they feel is  wrong with her and what she doesn't do right through their eyes.  She will never truly be happy until she starts living for herself and not through what others think of her.  I know as I struggle with this too... that this is a very hard lesson to learn.