Just an update for all based on some questions I have recently been asked. Ayzac has been suffering from renal failure for the last three years or so. He is now in Stage 5 (also known as end stage ) renal failure. Most people in stage five failure receive dialysis treatment and are wait listed for a kidney transplant. Ayzac IS NOT a candidate for either of these treatments. We have known this for over a year now. This is due to his primary disease which we all know is Mito. Without dialysis the kidneys will fail and Ayzac will pass away. We were given a 1-2 year prognosis February of 2013. April of this year we saw that Ayzacs kidneys have steadily declined within the expected range of his prognosis last year. He has less than a year possibly months and as little as weeks left with us. We just dont know when the kidneys will fail, there is no crystal ball for this and we hope and pray he wakes up each day. We have seen new and expected symptoms within the last couple of months and even weeks that have us preparing that his time is nearing. He is sleeping more. And by more I mean 5-7 hour naps some days. He is losing energy to play after as little as 15 minutes. He is gagging and wretching daily despite the 6 different gastric motility and anti-vomiting meds he is on. He suffers periodic insomnia, bone pain and headaches. His GI system is slowing and we are battling constipation and he has less urine output than usual. We were approached by physicians about doing a metabolic autopsy after death. We have agreed as this could offer us some answers about his specific type of Mito which is very rare caused by a newly discovered RMND1 gene mutation. Once we agreed to autopsy we were basically forced to make decisions about his death and funeral arrangements. I have had to sign DNR forms for home so that emergency crews dont unnecessarily rush into my home and perform CPR. There is a possibility he passes at home and we dont make it to Canuck Place Childrens Hospice for end of life care. For this reason we needed to also have a form called an expected death at home form. This allows us to pronounce death without waiting for emergency crews and a physician to pronounce death which can take hours because his body needs to be transferred to BCCH for autopsy within two hours. A funeral home needed to be designated to transfer him to BCCH for us. Not any funeral home but one very close to our home as BCCH is approx 30 minute drive in no traffic. As I am aware that there are homes that offer free services for children unfortunately the one we chose does not though they do provide services for children at a discounted rate. These are the many reasons I am pre-planning Ayzacs funeral. Also I cannot imagine having to make any decision of any kind when I am grieving his loss so it gives me a sense of control to have it be done and over with so we can focus on Ayzac and only him. I think I have covered all of the questions and curiosities. Please like, donate and share Ayzacs fundrazr link to help us raise money for the open funeral services which will be held at Victory Memorial Park in South Surrey. I want his memorial to be as amazing as he is and in the meantime I will smell his toes and play with his hair and soak in every single smile I can as his presence every day is such a gift and blessing in more ways than could ever be described in words....
Posted on: Tue, 27 May 2014 21:00:02 +0000
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