Sunday, May 12, 2013

The Unbreakable Bond of Motherhood

Mother's Day, the day of reflection.  At least it is for me.  I like to spend Mother's Day going over the last 12 years in my head.  Memories of ewwy gooey paint, play-dough, first Christmas Concerts and in our family's case, the IWK Hospital.  Being a mom to a child/children who is/where sick is no different then any other mom, we just have more grey hair.

My first born is a Clomid baby (fertility drugs), and if you had to do any kind of fertility treatments you will understand the exhausting care and planning that is involved in trying to conceive   I spent a good part of my 20's in anger over women who just "happened" to get pregnant or called it a "mistake"  My infertility took over my life,    a devastating miscarriage at 16 weeks, then finally on Christmas Eve Day I found out I was pregnant again.  A pregnancy that was not routine by any means, led to a healthy baby girl weighing 7lbs 5oz.  Everything was fine until she was 2 days old when she had a terrible allergic reaction to the diapers in the hospital,  it was like someone poured hot water all over her diaper area.  Easy fix they told me, just change the diaper brand.  That reaction was just the start of years of trips to the ER, countless specialist, x-rays, blood test and antibiotics.

Haley was diagnosed with a condition called Hypogammaglobulinemia (THI) at the age of 1.  This is one of the better immune deficiencies you can have, their immune system kicks in around the age of 2 or 3 and they tend to live normal healthy lives. When Haley was 2 years plus a week she welcomed a baby brother into her life, he was not a Clomid baby, therefore, he was free :)  Zack, a chubby 7lb 4oz little guy was brought into our life at a point when Haley was constantly sick.  Being on Mat. leave certainly did help to limit the amount of germs she was exposed to but it was still difficult.  After returning to work for  about 2 months it was obvious that I had more sick calls then work time and quitting my job to care for my children was my only option.  I then opened my home to friend's children and became a day time Mommy to a handful of kids as their parents worked.  It was perfect, it allowed me to be home with both children, especially her, when she needed me most.  Some of my best memories are of being a mom and a "day time mommy"

As much as Haley should have been getting better according to her Doctors, simply due to age and immune system maturity, she wasn't.  Zack was not without his own illness as he would pick up a lot of what she had.  He however, suffered from his own problem, digestive issues. Why do they both have digestive problems?     This is when I began to really do my research.  I swear I'm a MD, I just don't have the paper to prove it...self taught all the way. I became fascinated with how the immune system worked, why are they doing this blood test, why does she get the same repeated illness time and time again?  You have to understand Haley was sick ALL THE TIME, ear infection, lung infections, Pneumonia, chronic bronchitis,  bad gastrointestinal issues, measles, E coli, roseola so many times I'd lost count, all of this before the age of three.  She had an Immunologist Dr Izzukutz at the IWK and still does to this day, a Pediatrician, Dr Blake who was amazing and Haley knew who at the lab she wanted taking her blood and who she didn't.  All of this time spent in hospital and researching of blood types and cells led me to return to school to became a Phlebotomist.

While studying one night after a very long day of Zack not feeling well because of his tummy and she was starting to get sick, spiking a high fever, we had a horrible scare.  Haley and Zack's dad (Todd, my ex husband) works on the oil rigs and had just returned home from a long stint away.  As we tried to settle her, Zack, at the age of 3 was insistent that he needed to use the toilet.  From her room to the bathroom to her room I hear, "Mommy the poop won't come out" and there is my son sitting on the toilet with his bowels hanging out of his body.  I panicked, as Todd called the IWK and after EVERYTHING I had been through with Haley, I had no idea what to do. Upon instruction to bring him into EMERG by car since he was not bleeding I did what I was told.  It was the first time I had to choose which sick kid to be with, I never want to have to make that choice ever again.  I was told in EMERG that he had a prolapsed bowel, off to the IWK the following day to see a bowel specialist and testing for CF.  Apparently this can show up in patients with Cystic Fibrosis.  I was so thankful that the sweat test (to test for CF) came back negative but now I was taking Zack to regular IWK appointments to see Dr. Blake and a bowel specialist.  He was now taking a drug called Peg 3350, truly a miracle drug for his issues.  I felt between the two of them we spent more time at the IWK, for appointments, then we did at home.

Through all this I continued to study, caring for my kids pretty much on my own due to my Ex's work and at this point my marriage fell apart. I have absolutely no help of any kind here in Nova Scotia as all my biological family live in Quebec and Ontario.  (I do have a foster family here in Nova Scotia but we don't see much of one another)   I was on my own so I finished school and the kids and I moved to the city. I very quickly created a network of friends who to this day I call my family and would bend over backwards to help them.  I started working at our adult hospital on a casual basis and my fascination and amazement at how all that is wrong with the body can almost always be found through a blood test was born. I love my job and miss it everyday...now that I'm off.

There were many sick calls at my new job as Haley's illnesses continued.  However, now there seemed to be a gap in between them, finally small breaks where she was healthy.  In 2009 the H1N1 scare hit Nova Scotia.  As a health care worker we were given the vaccine early to prevent us from getting sick.  I remember saying to a co-worker I have to get this vaccine, if I bring this home to Haley it will kill her.  And kill her it almost did.  She fell ill on a Thursday night, I will never forget this. Like any other time she awoke with a high fever she would come and crawl into bed with me but this time she was in horrible pain, complaining that her back hurt.  Through every chest infection she's had I've never heard this child complain of pain.  By Sunday we had been admitted to hospital with the confirmation through nasal fluid testing that she did indeed have H1N1.  7 Days later we were in PICU having a chest tube inserted, her plural cavity on the left side had completely filled with fluid.  There was no air entry in her left lung, her kidneys were not working properly, blood work every 4 hours, pneumonia from the H1N1, then bacterial pneumonia on top of that, and a constant fever, that by the end of this horrific illness, lasted over 14 days.  It was by far the scariest time in my life, I was helpless and at the mercy of health care professional who were learning as they went along due to the unknown characteristic of this illness. Haley's Dad took time off work to be with Zack and us.  He would drop Zack off at school and come into the hospital for the day until it was time to pick him up again.  He would bring me food and sit with her while I used the "family" shower down the hall.  I felt even being away from her for that 20 minutes was too long. Thank God Todd's work was very understanding giving him the time off he needed.  After two weeks in hospital she pulled through but, it took a couple of months of recovery before she was back to her normal self.  During this time I can't even begin to say enough about my amazing co-workers, my employer, my friends and family who helped us get though it.

We've had the "normal Haley illness" sudden onset of fevers, chest infections, sinus etc since then but nothing as scary as H1N1.  She has annual check ups with her Immunologist, who confirm year after year that her immune system is just not the same as others.  She's a fighter like her mom and oddly enough she has only been really sick 4 or 5 times in the past 12 months.  Like I've said in a past blog, one at a time in this house.

I'm Happy to report that other then a tonsillectomy from too many strep throats when Zack was 7, he is a healthy 10 year old now.

I'm blessed on this mothers day to be able to reflect back on all my hard work.  I have two AMAZING kids who "get it" because they've had to.  They are not whinny or sulky, they are caring and kind all because life threw them some curve balls.  They have a Mother who through all of this crazy madness never gave up, or gave in.  I've taught them to embrace it all and keep going.  Life is not easy, it's not supposed to be, but together we have proven that we can get through anything.  Now that the tables have turned somewhat and I'm the sick one, I have no doubt in my mind they will be by my side every step of the way, we have created an unbreakable bond.







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