Little to update today. Kaley is still out, but every day is an adventure. She had a bad day on Monday (June 19th) where she did little but sleep all day, bounced back for a pretty good day yesterday (June 20th), at dinner she didn’t drink enough soda (which helps digestion) so by mid evening she was not feeling well, but luckily that passed. Now today, she’s not doing well again.
At least she’s out.
Kaley is still out (going on 3 weeks)! While it hasn’t been a great 3 weeks, at least she’s been out. We’re still fighting her blood infection and social security/Medicare, so life hasn’t been stress free. However, we’re getting more and more moved into our new home. We’ve moved/donated a bunch of our stuff to either Arc or to our off site storage locker, so the place is looking less crowded and more like a home.
Haven’t made any decisions or taken any action regarding the non-profit I posted about. I figured I had some other more pressing issues (i.e. Will and Trust Funds) to take care of first. Hopefully I will have made progress by the end of the year.
I had a crazy thought yesterday. When catastrophic things happen to people, you often hear about non-profits setup up for these people to help cover the medical and other expenses related to that person’s condition. People make charitable donations to these non-profits and write these donations off as tax deductions. Why can’t we do the same thing for Kaley?
Some time in the coming year, after I do more research about it, I hope to found the Bunn’s Prairie Foundation. It’s mission is to help cover the costs of Kaley’s ongoing medical expenses that insurance won’t pay for. This would include co-pays, OTC medications, helping with MA spend downs, and reimbursing people for mileage when helping Kaley get to or from an appointment or when they pick up a prescription for her. The Foundation would be funded by tax-deductible charitable donations. The overhead costs would be very, very low (read, 0 most likely or less whatever it costs to pay to have its taxes done annually perhaps). So whenever someone would do Kaley one of these services (i.e. give her a ride or pay for a med), they could simply submit the receipt to the Foundation and get reimbursed or could write off the mileage for a tax deduction.
I don’t know when this would be set up, I just thought of it yesterday, but it seems like a great idea. If anyone has any experience with non-profits or how to set them up/run them please let us know. We’re totally green when it comes to this.
Thanks.
Kaley’s still at home. She stopped taking her antibiotics for a few days since they were making her continually sick. She’s going to take the IV ones today and get reevaluated on Thursday. She’s been fighting to keep her potassium levels up. They’ve been floating in the 2.4 - 2.9 range for a while and has been taking huge doses or potassium supplements to try to raise it. As of last night it finally got back into the “normal” range above 3.
Sorry about being incommunicado for the last couple of weeks. Kaley has been in and out of the hospital since I last posted. Her j-tube again came up the back of her throat. They replaced it and, upon my demand of a better solution, finally suggested another option of having a j-tube that goes directly into the small intestines without going first into the stomach. With this solution the tube will not be long enough to become displaced. Why this wasn’t suggested to us 6+ months ago, I have no idea. Once again, medical people doing what they do with blinders on, I guess.
When she’s been home, her antibiotics/meds have been really hard on Kaley. She has spent several days being non-functional except for a couple of hours / day. Hopefully this will pass, otherwise we’ll have to find another solution.
Kaley and I also moved on Wednesday. We were living in a 1.5 story house in southwest Minneapolis and now we own a condo in downtown Minneapolis along the river. There’s still a lot of work to do, but we’re both really excited.