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Showing posts from November, 2011

Week Two at Toronto Sick Kids recap of Oct 31-Nov 6

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In memory of our baby Kyle: Oct 24, 2011 - Nov 8, 2011.  We had 15 days with him.  This is a summary of week 2.

If you havn't read my recap of Week One, read it first.

Mike and our daughter left on Sunday night to go home, while I stayed in Toronto.  I already had a hotel room booked at the Delta Chelsea for this week, since originally I was supposed to have baby on Nov 1st by planned induction and I had booked it as a place for Mike to be able to sleep for the first couple days before I would be discharged, and then for me to join him.  The hospital and the hotel are only a block apart from each other which is really helpful.

The weekend had been hard, as I described in the previous post, with dialysis lines inserted, dialysis started and stopped, and ammonia levels spiking high. They had also attached Kyle up to a fancy EEG machine over the Sunday and Monday for 48 hours to monitor for the potential of both convulsive and non-convulsive seizure activity from the high ammonia le…

Week One at Toronto Sick Kids. A recap of Oct 24-30th.

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In memory of our baby Kyle: Oct 24, 2011 - Nov 8, 2011.  We had 15 days with him.  This is a summary of the first 7 days.

As many people reading this know, I was pregnant with a baby boy affected with a severe mutation of Ornithine Transcarbamylase Deficiency, which means that he can't metabolize protein properly.  Protein gets changed into ammonia, but it doesn't get past that point in affected children.  The ammonia builds up, causing potential brain damage, and eventually causing the organs to shut down. We were going to do medical treatment to be followed by a liver transplant.  We weren't convinced we would get to the point of transplant, because the treatment would be difficult to manage.  But we were willing to try.  We were doing it day by day.  We were going to try, and if he made it, we would go buy everything that was needed.

I was due Nov 14, or Nov 11 based on ultrasound.  I've had two previous full term pregnancies.  My daughter was born at 10 days overdu…