Sunday, August 9, 2009

Rumination Days

You might think that when I don't post it's because I am doing well and because I am out living my life, when in fact I think the opposite is true. I think I must be at a certain point of alright to be able to talk about loss and that I must be "alright enough" to share my feelings and recollections about things. Sometimes I am not "alright enough" to post.
The last couple of weeks have been difficult. After eight months,the final report on Daniel's autopsy came. Since we had talked to the teams doing the different types of autopsies, there was nothing we didn't already have information on, but still to see it written on paper was very real, frightening and anti-climactic. They have been very good to us, and have checked for any of the obscure things I had asked about, even when they might have been rare or not quite rational. There were things found, but none of them should have caused his death. He had an apparent viral syndrome that no one knew about which had caused some lymph nodes in his abdomen, small and large intestine to be slightly inflammed. He had an extra spleen, which is not uncommon either. His spleens and liver were slightly inflammed in response to the viral syndrome, but he had been well and complained of nothing. The pathologists said that these particular finding are not at all unusual in children, and generally resolve. He had the pineal cyst, but it was 0.7 cm and it is felt that this was not large enough to cause shifting of brain tissue or death. Everything else, including coronary arteries, brain etc. appear fine. The cause of death is cardiac arrest due to probable cardiac arrhythmia of unknown etiology (cause).
Strangely this news put me into depression, and once again I went through a period of self blame. I have trouble reconciling that if a child is sick enough to die, that the RN homeschooling him who was off for vacation for two weeks before he died, should have noticed something.
Because Stephanie has juvenile diabetes, I have wondered if Daniel could have also, and if his sudden cardiac arrest was due to DKA, but there were no ketones on his breath. (I can smell ketones across a shopping mall because I have a diabetic child) I did CPR on him. I put my mouth to his. I would have noticed ketones ! I have done some research as to whether Daniel could have had something called HHNK, a type of diabetic syndrome which is uncommon with children, but I am bothered by family history and the lack of anything else. HHNK is a non-ketotic syndrome affecting primarily overweight children who have diabetes. They have mild symptoms, may not be diagnosed, may be thirsty, do not spill ketones, but rarely can die. With much of America being overweight, there are journal articles expressing concern that doctors may not detect HHNK when it occurs, albeit rarely in children. Daniel, like most American kids with a computer, was a little overweight and has a very strong family history for Type I and Type II diabetes on his father's side. Since blood sugar determinations after death are not accurate, and we do not have portions of the body now for specialized testing, the HHNK theory will have to remain just that. Meanwhile, I feel incredibly guilty for not doing a monthly bloodsugar when I had a Type I diabetic child. The fact is that even the siblings of diabetics do not often develop it. Even in twins where one has Type I or Type II diabetes, the other twin may never develop it, because it is felt that the development of diabetes is not only caused by your genome, or your genetic predisposition, but also by your epigenome, which is altered by your exposures to viruses, foods etc. throughout your life. Even twins have different epigenomes. No physician who saw Daniel ever recommended it, even once. Daniel's annual chem 20 profile was always normal which included blood sugar. These internal discussions may not be useful though, as an endocrinologist I spoke with yesterday reminded me that Daniel's pancreas, on microscopic exam was normal, which she would not have expected it to be, had he been experiencing DKA or HHNK.
The ruminations of what I could have done to change his passing are not rational, but I believe they are normal. They are part of a coming to terms with a terrible truth, and I would not be honest, or really living in the moment if I denied these feelings. I love Daniel more than my life, and I would have done anything to change what happened that day, had I simply noticed something.....anything.
Could God have just called him, not leaving remnants of why or of how ?

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