Wednesday, December 14, 2011

The Last Few Days Nov 6-8 and Beyond


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

If you havn't read my recap of Week One, or the recap of Week Two, read them first.

We spent the day at Sick Kids on Sunday, including our daughter.  The nurse that day was the same nurse who was there the very first day Kyle was born and brought over from Mount Sinai.  She arranged to have Natasha be able to be let in to see Kyle since she wasn't officially allowed to on the PICU floor since she was under 12.  I'm very thankful she did this.

This was the last day that he was responsive at all...he would still grip your finger if you put it into his hand.

They did neurological tests on Monday and Tuesday.  MRI, ECG, and a special type of ECG where they put goggles on and flash lights, do hearing testing as well as physical testing and all of them showed absolutely no response to stimuli of any form.  We made the decision to let him go, and spent time with him as a family for a while before releasing him from the meds and breathing tube. He was 15 days old.

It probably sounds strange, but the fact that the tests showed complete instead of partial damage made it easier to let him go, since we didn't have to make a choice in any form, the choice was already made for us.

It is extremely frustrating to us and to the doctors that they were able to get the metabolic condition under control only to have the E. Coli infection take over to such a terrible extent.

We came home late Tuesday night (Nov 8), and made visitation/cermony arrangements today for Saturday evening. We then travelled north to Sudbury to have him buried next to his brother Colin who died from the metabolic genetic condition at 3 days old 8 years ago.  It is also the same graveyard where my two brothers who also died from OTC, the same genetic disorder, were buried. 

We are exhausted, and sad, but overwhelmed by the tremendous amount of support we have received from all around us.  It's hard for people to hear that a baby has died...especially when this is the second time we have gone through it.  I don't know why us, but despite the grief and loss and pain and exhaustion, we are feeling overall ok right now, mostly because of how much support we have had.

The doctors commented how impressed they were with our advocacy for Kyle right from the beginning during the pregnancy.  Because of some of the information I had gathered and presented regarding emerging research for the condition at the beginning of this process, Sick Kids will be starting a new experimental treatment study to help babies with the same type of condition as well as other urea cycle disorders in the future. Kyle was not physically big enough for this treatment study, but I am proud that because of him it will be started at Sick Kids to help others if needed.

The study is experimental, and a little controversial, but we were willing to participate if we didn't have a liver donor or cadaver liver lined up fairly quickly due to the severity of the illness in our particular mutation of OTC.  It had been arranged for us to be flown to Yale to be in the study if needed.  One of our big concerns was travelling to the States.  As we had said to our doctors in Toronto, "Being in Toronto is hard enough, but at least our family and friends can come visit.  To go to the States means noone will be able to visit (due to finances), and we aren't familiar with the doctors down there."

In case you are interested in this study, here is a link, and if you want other information, let me know, as I do have other links I could share as well.

http://www.newswire.ca/en/story/861109/cytonet-s-liver-cell-therapy-trial-for-children-with-ucd-expands-to-canada

We were also told that Toronto General was overwhelmed with the number of applications they had for living donor for liver.  I know of six who applied, and another six who we told to told off because they only test one person at a time and they were still going through the applications they had.  Hopefully this has raised awareness of the need for organ donations and will help other families waiting.

There is so much more to write, but I have difficulty putting my feelings into words in general, and particularly in this situation.

2 comments:

  1. What a little HERO Kyle is!!! He has done more in his short life than I have ever done in my 33 years. Because of you and your precious son others will have the chance to live. ABSOLUTELY AMAZING!!!!!! What a legacy to leave! Thank you for sharing your precious son with us and for helping others to fight OTC! Your family is in my thoughts and prayers. God bless all of you!
    Love,
    Mary

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  2. It's amazing how much of an impact such a little guy will have on the treatment of others because of this research study. Without him it might not have been started and who knows how many other children that will help and save in the future.

    You and your family are still in my thoughts and prayers. :)

    Angela

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