06-17-2010
0630 Hours

Well, since our last posting, school has ended for the year and the students now begin a summer of fun in the sun.


Immediately following the last day of school I headed up to Butt Lake with our travel trailer and bass boat, even threw in the Fishcat float tube. This was the first time in over 18 months that I would leave Darlene for any great length of time, more importantly it would be the first time I was doing something for myself. Returning to places that we have so enjoyed together, I was not sure how well I would handle it. A couple of my buddies had planned on staying a few days but due to circumstances each was only able to come up for an overnight stay. Elby pulled our bass boat Saturday morning with me and, Joe came up on his new Harley Saturday afternoon.


Joe stopped off at the Peninsula Market at Lake Almanor and picked up three of the best rib eye steaks you could ever sink your teeth into. The Market has a little butcher shop that has become a favorite for Dar and I when we camp at either Butt or Lake Almanor.


Needless to say Saturday night it was a feast to behold, nothing better than an open fire and great food and a couple of great friends to enjoy it with.


Saturday evenings fishing left a lot to be desired, the wind blew like a big dog but our spirits were not halted as off we went in search of that “big toad”. We did not find the really big one but we were successful in coaxing a few to the boat.


Sunday proved to be the beginning of a tough week for Dar.


I wonder how we survived for so many years without cell phones, Internet and computers. Now that I have become an electronic gadget junkie, I wonder if I could survive a week without my blackberry and the internet. Both proved to be invaluable for the remainder of my trip.


Sunday morning I got a text message from Jamie that Dar started having bladder spasms, pretty severe I might say. We have been here before and it always seems that Jamie is the one that gets hit with this all to demanding situation.


As the spasms continued it became apparent that they were not going to cease any to soon. Jamie was a very busy caregiver for the remainder of the week. Changing pads as much as 16 times in a given day. We were able to contact our Urologist and Ditropan was prescribed, little did we know at the time that it would take about 4-5 days before we would see positive results. Jamie, the rock that she is was a knight in shining armor, always ready and faithful to her step mom. I have to say that Dar did not and has not experienced a skin break down because of the spasms.


By the time I returned on Saturday Dar was beginning to have some positive results due to the medication. Saturday was pretty much a dry day as was the night. Jamie and Scotty, also invaluable for support and errands returned home Saturday afternoon.


Sunday started out pretty well but by the afternoon the spasms returned in force and I was very busy for the remainder of the day. I made a call to Home Health looking for some answers. I attempted to flush the “cath” with no success; at this point I had but two choices. Remove the cath or leave it in and allow, “build up” in the bladder, not a good thing to have. I elected to remove the cath and prepared for a long night. Margie was gracious to come in about 9:00 pm so that I could get a little rest before heading back to work on Monday morning.


I have to say that once the cath was removed I found the source of all the problems of the week. It was definitive that once the cath was removed, you could see that during the course of the week it was plugging up. By Sunday when I removed it, it was plugged so solid you could not push water through it with a 60 ml syringe.


Monday, Home Health came out and replaced the cath and we have been dry and off the Ditropan ever since, such a relief to see Dar more comfortable.


I am attempting to have Dar return to CareMeridian for a period of about two weeks so that she can see Dr Doherty and Dr Dawson a few times. Doctor Doherty believes it is a great idea. Now we have to get it approved by Blue Cross. In as much as we start a new Benefit Insurance Year July 1st we receive 100 skilled nursing facility days. It has to be medically necessary and it may prove to be somewhat difficult but this may be the only safe way to get Dar to the Bay Area. Kurt Davis from CareMeridian is coming to the house to evaluate Dar and do what he can do to present our case to Blue Cross. Kurt has spoken to Cavi Von Husen from the Fairfax facility, and gotten some very good information regarding Dar’s situation and need to return and see Dr Doherty.


Kurt and I have spoken and we are gearing up for his visit on Wednesday.


Darlene also is now beginning her daily therapy of her Dyna Splint arm splints. It took a few phone calls to the corporate office and $1500.00 bucks out of our personal savings account but Dar will hopefully soon begin to see the positive results of the splints.


It seems way back in the day when Dar had her leg splints, (a total success I might add), at some point Blue Cross denied payment to Dyna Splints because the splint were not medically necessary and she was a and I quote” patient without rehab potential”. I remember that quote all to well but it got filed away with many other letters and such.


Well to make a long story short, Dyna Splints appealed and I too appealed the decision by Blue Cross. Both of us from different angles but both of us supporting our case that Dar’s use of the leg splints was the only reason we enjoy full range of motion and all in her legs, phooey on what Blue Cross thought, we have the proof.


In addition to the appeal Dyna Splint Corp and I came to an agreement that I would pay the balance owed and clean up the past due and when and if we won our appeal and Blue Cross paid Dyna Splint, I would be reimbursed


Felt a bit like we were being held hostage but that feeling went away very quickly as it was more important to get Dar the splints as soon as possible.


Dar wears the splints about an hour a day at the present time and it will take some time and effort on her part to get used to them. We are all looking forward to positive results in the future, oh oh almost forgot, these splints are being submitted to Blue Cross as DME, durable medical equipment, so these splints will belong to Dar and not be rental splints.


Before I add the last bit and most current news I am going to touch on a touchy subject. Touchy to you the readers evidently and definitely touchy to me the writer.


Folks there are only so many hours in the day, I am bustin my hump most all of those hours for Dar. I have no real down time; I have no transition time from work to taking care of Dar. When I got home from my trip, I had time to spot the trailer, unhook, pull ahead, grab an arm full of gear and go inside and start taking care of Dar.


That’s the way it is around here, go, go go. I apologize that sometimes its long between posts, sometimes there is not a lot going on and sometimes I am just to tired to put in the effort. An excuse, probably, but similar to those of you that don’t want to take the time to fill out a bit of information about yourself and leave a comment or thought of encouragement with a “your” name instead of “anonymous”, so impersonal.
Ok, I’m done with this. I said how I feel; you’ve said how you feel, “let’s move on”.


Yesterday, Dar was admitted to Enloe. She is in room 220, it is not clear if she has pneumonia or not but we are being very proactive to prevent it.


She does have a definite UTI again, her chest x-ray is clean and clear, her breathing is very clear and unobstructed, but she is not holding her oxygen in her blood. In other words her o2 sats are very low.
Jamie, Margie and I have all been staying in touch with Dr Verma’s office over the last few days and yesterday morning Margie returned a call to the doctor with the morning “stats” and it was decided that Dar needed to head to the ER.


Dar was in good spirits all day yesterday and was resting well when I left late last night. I will be heading over later this morning. I am not worried at this point at all and very pleased that I have a staff of help that not only love Darlene, but they all ago that extra mile for her every day. I’m not just talking about Jamie and Margie, I’m talking about all of our “team”, doctors, nurses, pharmacy, home health, everyone, all of you, thank you so much for what you and they all do. This marathon would not be what is, without all of you.


In closing, if I have offended or hurt any of you, I go on record now that that was not my intention and I apologize if I did. Just asking you to bear with this, "this is a marathon, not a sprint"

I wiiiiilllll write again, I wiiiiiiiiillllll try harder,


Love to all,
Dar/Danny/Jamiesue/Margie/Mav