The Day We've Dreaded
Today is the day that we finally learn why Cassandra died. We meet with the doctors from the hospital to learn the results of Cassie's autopsy which took over 6 months to complete. We've been pretty upset that it has taken so long, but at the same time it something I'm not sure were ready for. No matter what we hear today, nothing is going to bring Cassandra back to us. Beyond that, the questions seem kind of insignificant. Was this a mistake? Could it have been prevented? Was there nothing anyone could have done? Why did this happen?
However, if we find out that Cassie's death could have been prevented, then I will be taking on a new role in my life, and that is to make sure this never happens to another kid ever again. No one should take their child into the hospital for routine surgery and leave with only tears and grief.
I know that answers aren't going to make our lives much easier or much better, but at least there won't be so many questions anymore.
posted by Todd Akers @ 10:21 AM
5 comments
5 Comments:
It is minutes before I leave for the meeting with Dr. Keller. I am strangely clam. Being the medical sleuth that I am I think I already know what they are going to say. Cassie died of an undiagnosed metabolic disorder - fatty acid oxidation disorder. If this is the case I will be strangely at peace. There is no one to blame (other than the god I do not believe in but feel free to hate for what he has done to my life) and I hope to move on. My major concern is my Dad. He has so much hatred now. He wants someone... anyone... to pay for Cassie's death. Well you know what sometimes there is no one to blame. Sometimes shit just happens.
But I could be wrong.... We will post more info later. Thank you all for loving us and supporting us through this.
Well I didn't learn nearly as much as I hoped at the autopsy meeting. First, I should quit playing a doctor and leave it to others, Cassie did not have fatty acid oxidation issues. Her blood was tested and it was negative. However the doctors believe that she might have had hypoglycemia (from some unknown cause) relating to her Kabuki Syndrome. We never caught it because Cassie was tube fed regularly and over night so she never even had the normal nighttime fast that other kids have. So when Cassie fasted for this surgery and then it was delayed and then it took almost 2 hours well her blood sugar dropped and wasn't treated for a long time which lead to profound brain dammage and eventually death.
Dr. Keller would like us to scream from the mountain top to other parents of KKs about this possible issue because simple glucose monitoring of Cassie during her fast and surgery WOULD have caught this and we would still have our baby.
I guess this is now our mission.... to make sure other parents of KKs know about this danger. If we can save one KK from dying during surgery then Cassie would be proud.
Dear Todd and Daria,
The 6 month anniversary of Cassie's death followed by this most difficult autopsy meeting must be so, so hard. My love and caring are outstretched to you both, and most surely to Grandpa, at this time of more loss...that of the "Why's" you hoped for.
I am with you....
In the love of Cassie, Kitty
Dear Todd and Daria,
The 6 month anniversary of Cassie's death followed by this most difficult autopsy meeting must be so, so hard. My love and caring are outstretched to you both, and most surely to Grandpa, at this time of more loss...that of the "Why's" you hoped for.
I am with you....
In the love of Cassie, Kitty
I am thinking about you and about Cassie all of the time. I can't believe it has been 6 months already, maybe it feels like an eternity to you both. I will do what I can in my special education communities to let people know about Cassie - his is her leagacy: educating other families so that they do not have to go through the tragedy that you have.
love,
mere
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