Monday, July 6, 2009

Monday July 6

The above pictures were taken Easter weekend 2008. We all went to the coast and went fishing and cooked and had a ball! Sydney (John and Holly's niece) went fishing in the surf on the kayaks with John! I think I posted the top one before but it's so darn cute that it needs repeating!

When Holly arrived at the rehab facility this morning, the folks who normally do dialysis on John were getting set up. Holly asked them what his BUN number was which would indicate the need for dialysis and they did not know. When they did find out, it turns out that his creatinine level actually went down for the first time since he began dialysis. So, he did not need it today and it has been since Friday since he has had it and it was good that she asked them about it! This is really great news because it has been three days and John's kidneys were perfectly capable of keeping the toxins out of his blood for that long!

It is also a lesson for all of us who might now have or in the near future have a loved one in the hospital or a care facility. While we believe that John has received great care, we do not know how much of an impact Holly and other family members being there has facilitated his good care. I'm not saying that he would not be appropriately cared for otherwise but it seems appropriate that having someone to speak on your behalf when you cannot, or to advocate for your well-being when you are unable, is essential in the healing process. We have been vehement at times with our questions and feelings and although sometimes we get looked at like we are crazy people, we want to have a full and proper understanding of all aspects of John's treatment and make sure that the medical professionals are on the same page as us. Holly is fanatical about John being kept clean and him having procedures when necessary but not having procedures when they seem frivolous. There have been many times throughout John's journey when we have met with more than several medical professionals to get different opinions on what is needed at a particular time. A couple of recent examples would be his PEG tube for feeding purposes which we knew was necessary and the time that one of the weekend doctors thought he may need a tracheotomy (this is a tube inserted in the clavicle notch near the collar bone into the windpipe for breathing purposes). We argued and asked to have another physician's opinion and that physician tried a few things to see if John was breathing on his own and he was, thus no need for the trachea tube. I would hope that they would have waited on this tube anyway but us balking certainly must have given them a bit of pause.

I have decided after this happened to make sure that my living will is on file and everyone in my family has a copy of it. I had thought of doing this previously but like most people, just hadn't gotten around to it or maybe fear of thinking about something bad happening kept me from doing it. I want the people who love me to know that it's okay for them to hear my words in the form of a document at a time when I may not be able to let them know what I want verbally. Also, even at 40 years of age it is clear that it is never too early to have financial matters in order and even make a will. Although I'm no millionaire, I would like to alleviate any extra decision making stress when that time arrives. I found a few links but this one is current and seems to apply to Texas residents...please don't quote me on their legality but maybe this combined with some information from your local probate court might help: It turns out that with a couple of witnesses and a notary in some cases you can take care of getting these documents together on your own or with little legal intervention. Again, it's not my place to lecture or stand on a soapbox but I hope that our experience might allow others to plan for such a situation. To me, it's sort of like a vehicle insurance policy in that if you get one you probably won't need it but let it lapse even one day and that is the day that something bad happens to your car!

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