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Tuesday, September 17, 2013

The waiting.

As upset as we all were on Sunday, Tim and the boys had to head back to Fort McMurray.  I can remember Tim holding me and saying how exhausted he was just after a weekend, and that I needed to try to go to a hotel in the next few days and get some sleep.  I promised I would, but we both knew I was lying.  Going to a hotel was going to far away from Shayleen.  I wanted her to know that I was there, and not leaving her for anything.  All through Easter Sunday night Shayleen's little body started a new fight.  She got a really high temperature, and she started "tacking" when her heart rate went too high.  So then a nurse was sitting in the room to monitor her along with myself and all the machines. After not feeding her for the biopsy her belly had become distended, so they were marking that every morning to keep an eye on it as well.  It felt like everything started feeling very wrong.  I was scared to go to the bathroom in case a doctor came in and could tell me anything.  One doctor did come in from Public Health, to inform me that I would have to go for testing for HIV and STD's since we had not been using gloves when changing Shayleen or when they were working on IV's on her.  And I would have to call Tim, and he and the boys would have to be tested as a precaution as well.

Easter Monday was another slow day around the hospital, and I felt that something else was off with Shayleen but I could not quite put my finger on it, until I went to change her.  As she lay there on the bed, I realized she was hardly moving her arms, and not moving her legs at all.  I was frantic as we waited for a doctor to come to examine her.  Her little tiny limbs had so much inflammation in them that she had something called pseudo paralysis.  She was in so much pain that her body was not allowing her to move her arms or legs.  They had no idea how long it would last.

And then on Wednesday morning, I met Dr. Robinson for the first time, and as soon as she entered the room, I knew that she had some answers for me, and that I was not going to like what she had to say.  Doctor Joan Robinson was a specialist in infectious diseases, a professor in paediatrics at the Stollery, and I liked her immediately as she got right to the point, and then sat and answered all my questions.

Shayleen had been diagnosed with congenital syphilis, and since we were late in the diagnosis, it had moved into her brain fluid, and was affecting almost every part of her body.  Shayleen was born in 2009, and in that year, there were seven babies born with congenital syphilis that year.  While there was only one other case in the rest of Canada.  Ironically enough the year before Shayleen was born, I had done some articles about the high number of cases that were being diagnosed in Fort McMurray.  Little did I know that it would ever affect me and my family.  Little did I think that it would come to me in such a sad, terrible way.  Forty percent of babies that have it are born stillborn, or die within a few days of their birth.  Tomorrow Shayleen's new doctors would tell us more, but today they needed to start treatment, and she would have to be monitored very closely.  I actually got on my knees that night, I think I had the thought that if I was uncomfortable on the cold hospital floor that God would some how hear me better.  I think it was the only time that I ever prayed like that, and I stayed like that until I got up to start my now nightly ritual of walking, singing and comforting our little girl.  Whatever came tomorrow, we would deal with then.  

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