News, updates, and happenings with the Kragnes family: Phil, our Seeing Eye Dogs, and (me) Rebecca.

Ups and Downs

Life has been kind of a rollercoaster lately, but it is nice to have a few ups as well as the downs. Phil had debriding surgery again last Monday the first. Phil’s getting restless to return to work, but it will be at least two or three weeks yet. He saw his wound doctor on Tuesday, and although she was pleased with the amount of fluid which has come out of the wound and shrank the leg, she was extremely unhappy with the nurses. She gave them orders to pack the tunnels in the wound and told Phil if her orders had been followed, more healing would have occurred. Now she wants to see Phil in two weeks, and the nurses are to pack the tunnels. Phil could dress the wound himself, but the tunnels require sight to pack. So it looks like we’re stuck with home healthcare nurses for another two weeks at least. Phil was really hoping if he could dress the wound himself, he could return to work. I’m feeling resentful that just because neither of us can see, we’re having to have more visits than most people would, which of course increases the cost. I don’t know that there’s a precedent, and I can only hope insurance will cover most of it. Then there’s the nurse who claims alergy to dogs, despite having at least one at home. Whenever she visits, I have to tie Zane down with me in the bedroom. Last Tuesday she came when I was trying to get ready to leave and finish lunch. We’ve discovered Zane can’t be in the bathroom when I shower, or he gets ear infections, so I would have had to have him tied down back here by himself. It was a nice day so thought he might be OK outdoors for the duration of my shower, but no,. Even with my five minute shower, he was barking his fool head off. This is the Lab who loves to lie in the sun on 100 degree days, so it was more about him wanting to know what was going on. I got to the point of needing both hands to accomplish tasks, and she seemed to think it was ok to let him go. Next time she was due to come, I asked Phil whether he wanted Zane tied down, and he said no. She complained and asked if he could be put in another room. Phil assured her Zane would settle in a couple minutes, which he did. I asked Phil how he would have reacted had Garrn been alive, and he said it wouldn’t be an issue. Like Zane, Garron would go lie down within a couple minutes of her arrival. There’s now a sign about keeping rubber gloves out of reach because Zane’s gotten a couple. We have no idea what the attraction to rubber gloves is, but even our dentists know they can’t have them lying around. i’m getting tired of nurses cluttering up our space and moving things without letting us know. Phil and I know he needs them, but we’re both getting tired of it all.
Phil is not taking as many pain pills or needing a numbing agent to have his wound dressed. This makes him a lot more alert and fun to have around. The alertness is a plus now, because suddenly JAWS has decided not to work on our computer. At least he’s able to trouble shoot and try getting it working. I had to cancel a show last night, but I hope he’ll have things working by tomorrow night’s show. I’ve been feeling some of the companionship, affection, and fun coming back into our marriage. We’re both getting used to my foibles and the fact that i just don’t / can’t do some things with the same efficiency and grace as he does. i burnt some potatoes because of stuttering on a timer key. Luckily the quiches turned out, and he wasn’t upset. I was far more shook up and said I wouldn’t eat tater rounds for a while.
Phil’s been doing little things like putting up a jewelry tree, and he found some inexpensive but powerful colored lights. The lights have settings which make them react to sound, and one day Phil was playing such good music with the lights I almost forgot about my ride. He also ordered some sunglasses with sound reactive lights and a rechargeable battery for me to try at the Malt Shop. if they get a good reaction, I’ll try them at a performance next month for the 25th anniversary of the Americans with Disabilities Act.

Spring Update

I feel like it’s been forever since I blogged. I like to have time to write when I’m not interrupted, and I haven’t been able to count on that very much. I have a show later, so didn’t join Phil at a friend’s graduation. It seems like I’m either exhausted, depressed, both, or trying to chase my tail to catch up. I have taken time to go out in the sunshine while the lilacs are out, but even then, I’m listening to someone’s show live and can’t focus on writing. With a recording in the background and no expectations from the presenter for feedback from me, I finally have a few minutes to catch up.

I’m not sure I’ve even written since the Stevie Wonder concert which was so needed with everything going on. I’ve had to adjust to “wheelchair time”, meaning everything takes longer for Phil to do while in a wheelchair. That night Jennee and Steve had to learn how to assempble and disassemble it to go to dinner and then the concert.  Phil’s wheelchair got us upgraded to the 28th row  from the front on the main floor, and even though Stevie started 23 minutes late, he went until midnight. I’ve seen a lot of wonderful concerts, but this one was probably the best. Even at 64, Stevie sang everything in its original key. I had seen India Arie in concert by herself, and it was awesome to see her duet with Stevie on songs on which  he originally overdubbed his own harmony. After it was over, I sat down in my seat and bawled like a baby!
Our friends Jennee and Steve got engaged that night. Phil and I new it was coming, and I really thought I’d told Phil when it happened during “Knocks Me Off My Feet” at the concert, but … I guess not. Jennee and Steve are new friends, but they have been a very great part of our getting through these hard days. A couple weeks ago, they came over with cookout fixings and used our grill. The four of us sat out on the deck for a few hours and just talked. Phil used crutches to get up and down the steps and across the deck. Steve helped with groceries when Phil first got home and they both helped me with them when Phil was in the hospital. 
Another new friend DeAnna came over for a talk. She’d given Phil rides home, but the friendship truly became a lot more the day she came to get Garron to try to get him veterinary help (and he died in her back seat). The three of us talked about what happened in detail over tea on a lovely April day.
My friends Kathleen and Kathy from church have also been helpful running errthes a lot more quickly than the bus would allow and even pitched in hear when we couldn’t find help with things. We are still very thankful for those who donated to Phil’s ramp page, as that ramp will be here for a long time. 

We are both still hopeful’ we can say goodbye to it by fall, although to hear Phil talk, he thinks it will be more like late summer. Of course, this is the same man who finally came to terms with the fact he would not go to a day long conference in DC June 8th. He bought a “rollaitor” (a combination of a walker and a wheelchair) for the trip, but it will still get plenty of use. It’s making its debut today at the graduation, because unlike the chair, it folds up small and is very light. Phil has attached reachers, holders, covers and even a pair of speakers to his wheelchair to make more comfortable a chair in which he needs to spend a lot of time. At first, I thought perhaps these were overendulgences, but I’m learning that they are necessities given the amount of time he spends in it. 

Just yesterday, our friend Catalina came over to spend a few hours with us. I’m thankful for friends who ask if they can come over, because it’s really hard for me to ask right now. Sometimes the chaos and unpredictabbility of our house makes me feel concerned about trying to schedule social things. For instance, last Friday Phil attended an appreciation day for access assistants at work. The Nurse was late, and the ramp man showed up to modify the ramp. There was barely time for lunch  before his ride. Most of the home health nurses have been wonderful, but whoever schedules them is not wonderful. Phil alerted them about these graduation plans yesterday, but they’re coming over tonight due to not being scheduled this morning. This means I’ll have to do at least part of my show from the office. In spring and summer it’s usually not a probalem, but we’re having a little cool snap in which the fireplace would feel very good!
I changed radio stations since last blogging, and I’m having more fun than ever before doing shows. The new management team is treating me like I’m valuable, and unfortunately, I didn’t feel valued where I was. My Blessing Blend is still on Thursday 3 AM UK, 10 PM Eastern Wednesdays for three hours of a lot of Christian genres. There’s a replay of that show on Sundays, 5 PM UK, 11 AM Eastern. Keyboard Kaleidoscope is still on live Saturdays 1 AM UK, 8 PM Eastern Friday Evenings. There’s a replay of that show on Tuesdays, 9 PM UK, 4  PM Eastern. To listen, point your Web brousers to 

http://www.ultimateradioexperience.com  or look for Ultimate Radio Experience on your radio apps.
My birthday celebrations were quiet. I did get to go out to dinner at Wok in the Park restaurant the Tuesday before and did a cool birthday song show highlighting a lot of songs I remember from past birthdays. I played for Mass that day and made plans to hear a couple radio shows in case Phil wasn’t feeling good. He wasn’t for at least part of the day and during the time at the restaurant.  We had a wonderful supper delivered from Noodles and Company and the Bite Squad.  the  dinner group which celebrated with me at Wok in the Park is going to celebrate with Phil the Tuesday before his birthday. We hope to organize another event for a few friends on the evening of his birthday. 
Phil  continues to have a lot of pain at times.  The wound is getting smaller, and he is off the wound vac, or as he calls it, “the pump”. He was attached to this device with a hose, and it drove him crazy. The daily struggles with the wheelchair and movement in this small house in general make him understandably frustrated.  We’re going to have to have some professional help geting some of the baseboards restored, because maneuvering the chair in carpet has caused some collisions  — especially turning and lining up with doorways.   Then we have things like the doorbell go out with batteries needed in April. We were waiting for our tax preparer and didn’t realize he was standing out there ringing and ringing. It was the day before taxes were due, and we got ours in the nick’ of time. Then last week the outside doorbell quit pairing with the perfectly working intercoms.   Phil looked at getting another system like that, but instead found a doorbell which works with an app on our phones. It will be great when we get used to it.   He’s also put up a temporary mailbox, so we could access mail without having to find a way under the temporary ramp. All this and other little things meant me getting tools from the basement, and although I know the difference between a hammer, a nail, and a saw, there’s not much beyond that. So phil not only has to describe in excruciating detail where things are but what they feel like. And sometimes I even get that wrong. Phil has discovered he can set up his own shower, and that’s probably a good thing. Now it’s second nature, but I messed it up a couple times. The hardest thing in getting clothes is managing his belts,, and although I definitely still mess it up, it’s getting easier. There are times when the shouting  about the struggles, the complaints about my mistakes, the unexpected, urgent requests  to do something when I’m on a tight schedule,  and the painstakingly long times it takes to do things in a wheelchair make me feel frustrated, devalued, and depressed to the point that I start wondering if Phil would be better without me around. Nobody panick. There’s no plan. Just thoughts. . Getting out of the house helps, and sleep is a very nice escape. I’d be embarrassed to describe the state of my laundry. Let’s just say it isn’t getting done, and that has to change very quickly. otherwise I’ll have no clothes to wear. Considering how often I need to get out of the house in the next few days, I’m going to have to do a couple loads at least. 

Garron

This is to let you all know that Phil has sufferred, and I mean sufferred a terrible blow. His German Shepherd, and Seeing Eye Dog Garron died this morning. He wouldn’t take a chewable which is usually a treat. He was panting and gums were cold. He was taken to the vet hospital but didn’t make it. He was in cardiac arrest. The theory is a tumor burst. Garron was nine years old.
Phil needs more support than ever!! His phone number is 612-273-8285, and he is located on the 5th floor of 2512 South 7th Street in Minneapolis, also known as the rehab building. His E-mail address is pkragnes@tcq.net and E-mails would be more accessibble and therefor preferable to cards or letters. He is also easily found on FB for messages. If you are local and can possibly come to visit, that would be best

Rebecca Kragnes and Zane (Black Lab and Seeing Eye Dog)
3733 15th Ave. S.
Minneapolis, MN 55407
Home: 612-827-2132
Cell: 612-387-5884
Email: rebeccak@tcq.net
Twitter: @RebeccaKragnes
Web: http://www.rebeccak.com

Phil is going to rehab.

Hey people! Writing to say that Phil sounds so good! He still is getting some pain meds, but oral pain meds don’t seem to affect him the way IV meds do. He’s lucid, and best of all, he’s moving to acute rehab today!!! I talked about the fact they would push him, and he said their idea of pushing probably didn’t match his. It will be very interesting to hear what life is like in acute rehab. I keep using the adjective, because this is different than transitional care, which is considered normal rehab. He’s hearing he’ll be there seven to ten days, so maybe by the first of March, he’ll be coming home. I really think this is a momentous step, and it will be so interesting to compare the way he was arriving home without rehab and arriving home after acute rehab.

As for me, I feel a lot more hopeful now. As much as I have enjoyed seting my own schedule, it’s the one advantage in a long list of disadvantages of having Phil and Garron away. The other one is the ability to move about more freely with big laundry baskets, and there’s going to be a lot of that happening in the next days.

I’ve been sending Facebook posts, but haven’t been good about updating blog readers. Things have happened so quickly that it seemed wise to wait until things slowed down a bit.

I believe when I last wrote, Phil was headed for an angiogram to examine a possible blockage in his leg. The blockage was quite sizable affecting all three arteries, so he was scheduled for a bypass surgery to create an alternate route for blood flow. He had that surgery on January 23rd and was back in the OR less than 24 hours later to get rid of a hematoma which is a glob of blood under the skin which is quite painful!! The hemtoma was the result of the doctor using blood thinners during the first surgery. The blood thinnerso were stopped, and the wound from the surgery grew bigger after the second.

Monday Phil was back in the OR for the doctors to sew at least one side of the wound. However, while in surgery, it was discovered that the bypass graft done on Friday had clotted. I heard from two doctors that Moday the 26th, and both sounded very grim. They opened the graft with balloons, but were pretty sure it would clot again. They warned us that if it did, amputation was the next step. The doctors said they felt due to the tinyness of Phil’s arteries in his foot, it would eventually come down to the leg coming off. They also told me on some sort of blood flow scale, healing occurred at 50. The blood flow in Phil’s leg was at 7.
Phil was in a tremendous amount of pain, and true to their word, when they went to sew another part of the wound on Friday the 30th, despite the low dose of blood thinners, the graft had clotted. Phil agreed to amputation Saturday the cannotast asking the doctor to try to keep it below the knee like his other leg. The amputation was Monday February 2nd. So now he suffers the post-amputation pain. As a reminder, this makes him a double amputee. He’s still determined to come home rather than going to a rehab center. I understand his reasons, but being the one responsible when the professionals have left really worries me a great deal!! Still I understand the motivation to get up will be stronger knowing his way around the house rather than some strange rehab center. There is quite a bit of pain yet to be managed, and the physical and occupational therapists are now just starting to get him out of bed. The very earliest any release will occur is the first part of next week.

Garron is at friends’ so Zane and I can come and go without leaving him alone. I am trying to avoid visiting Phil when therapists are likely to work with him. Zane and I could be physical obstacles, and listening to him enduring pain is difficult enough on the phone or live when he’s still in bed.

First Update of 2015.

Seven years ago on January 8, 2008 I met my now 9-year-old Black Lab Zane. He’s been my best worker hands down, but I believe that’s probably the last time I’ll train during the winter. A new dog needs at least a few months to get used to our environment before we add snow and cold into the mix. Zane is still working well, as is Garron, and we’re grateful for that!

Last year on January 8, Phil was going through is current kidney transplant. It and the pancreas transplant from 2009 seem to be doing well.

Today we received some potentially hard news depending’ on what happens. You all know that I am a fan of finding out the absolute worst scenario, because then if it doesn’t happen that way, it’s even more of a relief. Otherwise, I have more time to brace for the worst. Our holidays were dampened by the persistent and increasing pain in Phil’s toes. He saw his primary care physician a couple times in late November and early December. The soonest his doctor could originally get him into the combination wound doctor and podiatrist was January 15. An appointment opened up for today within the last week, and Phil went. His primary doctor did a blood flow test and said things were fine there. Today’s doctor and his vascular colleagues did more extensive testing, and although the blood flow is good, the oxygenation in that area was not good. The next step is an angiogram too look at the vessils in order to determine what kind of blockage it is. Some dye will need to be injected which could be hard on the kidney in larger doses. Luckily, they won’t need that much. The transplant people say as long as he discontinues one of’ his meds the day before and stays hydrated, it should be fine. There’s a 50 50 chance they may be able to go in and fix the problem. Calcification or hardening of the arteries is responsible for this issue, and just because The Diabetes is not present doesn’t mean the damage isn’t extensive. There are a couple of positives. Unlike last time, the toe is cherry red, not black, and one adjacent toe which was blistered has completely healed. This means that potentially, the two other affected toes could do the same. The worst possible scenario if the the blockage can’t be addressed is another below-the-knee amputation of this leg. Living through all that was not an easy experience for either of us, and I hope and pray we don’t have to relive the pain and frustration of those days. Now at least we’re in a house instead of a 640 feet apartment, but the holidays were testament enough about how difficult it would be for us to go through the pain. Phil’s allergic to many pain killers so has been taking what he can. They make his brain fuzzy, his body lethargic, and/or his motion sensativity high. I’ve been on pins and needles figuratively and liertally trying not to step on any toes. Of course, the dogs don’t understand the issue, and both have stepped on his foot more than once. In addition to the pain which is unpredictable and makes him grumpy, he has a head cold which has gone into his sinuses. This means coughing and moaning. The pain and coughing are most frequent at night, which doesn’t make me want to go to bed until he is long asleep. We’ll get through whatever comes, but we can always use prayers.

We have had good news on the computer front. Our friend Eric came over and installed the new drive in our machine. The first time the old drive was imaged, things didn’t work well at all. Over the next week, Phil and Eric worked remotely by FaceTime. Phil would point the iPhone camera toward the screen, the two of them would talk about what was on it deciding on a plan, and Eric would tell Phil what to do on the keyboard. In this way, they restored all but a miniscule part of the hard drive full of errors and reimaged it onto the new drive. The computer seems to be working beautifully, and I’ve been able to go back to doing two live shows a week — Blessing Blend Wednesdays at 10 Eastern and Keyboard Kaleidoscope Friday Evenings at 8 Eastern. Both shows can be heard on http://www.the-phoenix.net.

The only other relatively minor thing comparatively speaking is that the guy who helped me get started in this radio thing has left The Phoenix to broadcast at another station. Although I know I have a lot of friends and colleagues who respect the unique shows I’ve brought to the station, I will mis working with Dave. He said he’ll always help me if I need it, but with the computer under control, I feel like I’m starting to be on a roll with my shows. It was a real compliment to be ask to do special holiday shows during Christmas and New Year’s. It really does make me feel good to do these shows, because I remember how much of a difference listening made when alone and/or ill, not to mention enhancing the good times.

For now, Phil is using a combination of Metro Mobility and rides from coworkers to get back and forth to work. This is not only because of his foot, but because of the frigid weather we’ve had. I thank God for heat and our fireplace!
I know it’s been cold everywhere , relatively speaking. We’ll get through whatever comes and the rest of this winter. I’ll keep you abreast of what’s happening here, and we will hope for the best.

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