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Friday, August 16, 2013

Easter weekend

After Shayleen's spinal test, I can remember sneaking out into the main hallway of the Stollery late Holy Thursday night, and calling Tim.  Everything that I was going through felt too heavy to handle by myself.  I was terrified that Shayleen was going to pass away and I was going to be there alone with her.  I couldn't figure out why the doctors could not tell us what was wrong with her, and I felt so helpless sitting beside her bed watching her little body struggle.

The room that we were in at the Stollery quickly became my home.  It had a little mattress on the flat surface under the window that faced out onto the inner workings of the hospital.  The only meal that I can really remember going for was breakfast.  Once the early morning tests were over she would fall into an exhausted sleep and I would literally run down the hospital cafeteria for my breakfast bagel and take it back to the room.  I can remember waiting for the elevators there, and they seemed to take an eternity.  I was always scared that she would wake up while I was gone, and would get worked up when I wasn't there.  It happened twice, and I would hurry back into the room, forgetting my hunger, dropping the bagel, and swipe her up into my arms to try to find a position where she would once again be comfortable.  The nurses put an order on her file that if you were not comfortable with Shayleen, you were not to attempt to pick her up or disturb her.  Her little body was in constant pain.

And then it was decided that she would have to go for a liver biopsy.  And they were going to do another spinal.  I had to ask four doctors before they decided that they would go ahead and do the spinal when she was under for the biopsy.  I was so relieved that she would be asleep this time around, wouldn't that be better for her?  But first we had to prepare for the biopsy.  I of course, went to immediately to the computer to find out what this test would be like for her, and the information I found there did not make me feel better.  There was a high risk of bleeding from the needle that actually entered the liver, but there was also a risk of puncturing other organs, and she would have to be monitored closely during and after the biopsy.  Plus she would now have to suffer through another spinal, and since she was so tiny she could not tell us exactly what hurt, or how bad it was.  To prepare, I had to once again put Shayleen through a fasting.  I would not be allowed to feed her after midnight, and she would be heading to surgery in the morning.  That was the plan.  At almost seven weeks now, Shayleen went through the eight hours of fasting, and even though her body was in terrible pain from the tests, the inflammation, and the unknowns, she was now more uncomfortable from hunger.  But even feeding Shayleen was something that could turn into an experience.  At the most, she would take a quarter of an ounce, and then seem full.  I would wait, and walk, and burp her, and wait until she might take another quarter of an ounce.  She seemed to be in pain even drinking, but I was terrified I was starving her all the time.  And then another nightmare.  Her IV stopped working, and they could not get it running again.  They started trying to get her little veins to accommodate one at 10p.m., and every hour someone new would come into the room, and we would lay her little body down, hold her down, and fight to find a vein that would work.  It was not until early the next morning that a former vet, who had started IVs on birds finally got it working.  I remember collapsing in the chair beside the bed crying.  It had been 10 hours of watching her suffer, and it was like nothing I had ever experienced before.

8a.m. came and went, her surgery time was bumped.  We would now have to keep fasting her until lunch time.  By the time 3p.m. rolled around, I was in tears again.  I did not think that her poor little body could take any more.  They came for her at 4p.m.  The porter was a super sweet British lady, who was like everyone's Nanny.  I was allowed into the operating room until they got her asleep.  And then that kind British lady gathered me in her arms and guided me back to the hall.  She came back to check on me every so often, and encouraged me to go get something to eat or sleep.  I don't think I would have been able to move if someone had forced me.  It was 7p.m. before she was in recovery, and 8p.m. before they finally brought her out, and we headed back to our room.  And still no one could tell me anything, except that even sedated, Shayleen had fought back on the spinal, and they did not know if they had enough for a good test yet.  And now, I still could not feed her.  We had to wait two hours.  It had been 22 hours since she ate....and she was seven weeks old.

Tim immediately heard in my voice that I needed to see my family.  I had never been away for my boys except for one night when I had traveled to Baddeck with my sister's in laws and my mother in law a few years earlier before we left Cape Breton.  I was stressed about how they were doing, and it was Easter, I had never missed a holiday with them all before.  And now, they were giving Shayleen Saturday and Sunday "off" from any major tests, so hopefully they were going to tell us soon what was wrong, and how it was going to be fixed.

We had bought Shayleen her first Easter Sunday dress.  And on Sunday, with her IV failed again, we were allowed to disconnect her and take her to Sunday mass on the fifth floor in her little pink dress.  We came back from mass feeling more relaxed, and we gathered around her bed to take some family photos before I took off her pretty Easter bonnet and dress.

I was so happy to have a little girl to dress up....and I always loved little hats, so she had to have one.  And then I took her pretty little dress off, and she was covered in an angry rash, it looked like her chest, back, and legs were on fire.  I immediately pressed the buzzer hanging above her bed, and the nurses came running.  An intern was called in, and I was devastated to hear that my desire to dress her up might have caused the irritation.  An older doctor came in later in the evening, and as I sat rocking Shayleen, I asked him if it could be HIV.  I had been googling things again, and wondered about the rash.  He assured me that she would have been tested when she was born, so there was no way it was that, and then he wished us a good night.  It was less than 10 minutes later when he returned looking a little shaken.  Apparently the tests that they thought had been done in Fort McMurray at the time of her birth had not been done.  A lab tech would be here shortly to test us both for HIV, Syphilis, and hepatitis.  It would be at least three days before we had any results.

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