I’m in bed early, because it’s so cold here! I am so sick of cold; and things have been better with both doors. Phil is learning all he can but says he is probably coming to the end of what he can be taught. Garron is adjusting there beautifully, and the couple times he landed on the wound it didn’t seem to hurt. Phil says it probably didn’t do much to help the healing, which is the other reason he is still there. He’s hoping the pre-release meeting is scheduled for this week. He’s still on oral pain medication which makes him drowsy, but he is still himself. We’re saving our money on transit and just using the phone, because it’s likely we’ll have to cover whatever insurance won’t in buying a wheelchair. It will be better for getting around the house than that monster walker he has. Toward the tale end of rehab, he and a physical therapist will visit the home to get modifications settled. There may need to be a crab bar near the toilet, and even one of my sighted friends says she can’t envision how it will be done.I’m trying not to worry about the days ahead, but have concerns both dealing with Phil’s coming home and not related to it at all. After sending this, it’s time to escape under warm blankets and into a good book.
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.
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.
[To the tune of verses to The First Nowell. Feel free to sing the song’s chorus after each verse.)
1. The First Nowell, the Zangel did say, To a German Shepherd he met on his way,
To the stable where animals of the Earth,
Welcomed the Holy Family and witnessed Christ’s birth.
2. When they looked up, and saw a Star,
Indicating the stable was not that far.
And just ahead, three gentlemen wise,
Were laden with some things which were of great size.
3. Along with small packs, they carried by scores,
Were a heavy cooler and two bulky, steel doors.
What the cooler held, the Zangel dreamed,
Thinking of all that good food made his brown eyes gleam!
4. The Cooler contain, a great gift of life’
A kidney to end Phil’s dialysis strife.
As for the doors, they’d keep out each storm,
And help keep the Kragnes house cool or warm.
5. The Shepherd knew, that radio software,
With a hard drive would bring Rebecca to the Internet air.
For those who ask, of the small packs’ contents,
Of course, gold myrrh and frankincense.
6. The dogs reflected as they trod,
Doors, software and kidney were gifts from God.
Just as they are, in our lives and this sceen,
We wish you a safe, happy 2015.
I thought the next update would be the Kragnes Carol. It’s still in process and will be coming, but right now the computer isn’t booting. We have the new hard drive, but have to schedule someone to help us image the contents of the old one and put that image on the new one. I’ve been recording my regular shows, but until this problem is fixed, there will be no shows for a while. This past weekend, the Phoenix held its birthday weekend, and as the computer kept getting more temperamental due to the drive, I knew my participation could be risky. So despite my deep desire to have a show, I let it be known why I couldn’t do it. I listened to a lot of the shows, and what I heard was brilliant! I am so proud to be working with such quality broadcasters and have made many friends among them. Therefore, even though I knew my decision not to have a presence for this event was sound, it still made me very sad too. I also played for two Masses and had my regular Malt Shop gig. I knew some of my blind friends planned to show up to hear me Sunday night, but was surprised at the number of people who came. I’ve been reclusive this year and haven’t been involved in social activities with a number of people who showed up. We used to get together and/or at least talk on the phone. I haven’t felt like I was very good company so have kept to myself a lot this year. I think that needs to change in the year ahead. There were also people with whom I barely had any contact who chose to come and one person I barely knew. My last song was “Oh Holy Night”, and it about brought me to tears when their whole group of 15 and other customers started singing. I was also extremely touched when I learned the group had gathered an envelope of tips and put braille on it, saying how much they enjoyed hearing me play. This was one of those times when 1. despite challenges and setbecks, I knew I was supposed to be doing what I’m doing. 2. I was reminded that I have more friends than I realize.
My gig at the IDS Center Crystal Court was also very successful. It too brought out a few people I didn’t expect to see, and other positive things I didn’t expect happened related to this event.
I also wanted to bring you up to speed on Phil’s foot. He’s had increasing pain for the last couple months and went to his doctor once in late October or early November. It was bright red then, but despite a series of tests, no answer was found. We both worried it was related to circulation, but at his appointment yesterday, it was confirmed that circulation is strong in the foot. However, apparently the skin has been torn away exposing the nerves. Phil and his doctor have come up with something to try to keep socks from rubbing on the wound. He sees one of his doctor’s associates to check progress and has an appointment with the wound clinic in a month (which was the soonest he could get in). Right now I hear him whimpering and groaning in pain just trying to get to sleep, and of course, I’m worried about him. Sometimes it doesn’t hurt much, and other times like just now, it’s so bad he can barely stand it. after sending this, it’s time to go back to the intrigue and escape of a good book. No matter what else is going on in life, fai, books, fun games, and music keep me grounded
Normally at this time in the evening, I’d be getting ready and doing my Blessing Blend Show. The computer is too unstable to do live radio, until we can figure out why it randomly shuts down both during live shows and when it’s just sitting there waiting for use. I won’t even go into the unsuccessful boots. Phil asks for very little computer time when he’s home, and without a show, I can do most of what I need on my phone, including writing this. It’s hard not doing shows, and I’m going to attempt to record Friday’s Keyboard Kaleidoscope. That way, if anything goes wrong, no one has to hear me embarrass myself live. Probably the hardest thing about this is the timing. The Phoenix has an amazing first birthday weekend planned, and as of right now, I’m on to do a show. Management isn’t thrilled about the solution another presenter and I have come up with in case we still don’t have a working computer in a week and two days. I have no idea whether I’ll be allowed to do the show, or need to give it up for what some may see as better programming. Our team is international, and despite some people’s computer knowledge, it would be difficult to diagnose the problems literally sight unseen. Most of us are blind, and whenever the problems occur, our speech is the first thing to go and the last thing to come back.
I probably don’t have to tell you that trying to work with Dell to see if our machine is covered by a warranty to fix some of these problems has itself been problematic. We can’t go through the traditional trouble shooting steps they require before sending someone out to fix the machine,, because it’s not possible for us to do these tests without being able to see the screen. Ad to it that English is generally not the first language for many of these people who seem to be reading from a script, and you have a recipe for disaster.
I know I’m whining,, and I need to stop. So much is better this Thanksgiving than last year. Phil’s kidney is still doing great, and we’re going out for a traditional Thanksgiving meal tomorrow night, when he can eat potatoes and drink all the fluids he wants. And there’s no dialysis schedule to work around. Phil has his bad days when he’s in pain or motion sensative. But the time spent at and side effects of dialysis doesn’t make it worse. He is involved in a pretty big and stressful project at work, but his colleagues and supervisor are feeling that same stress. This fall he went to two conferences, and I know he enjoyed both of them. He told me of several incidents which were nice ego strokes for him.
We’ve already ordered our Christmas present, and it’s one of these necessary but not glorious things, a back dor. The one which is on now is not secure, has poor insolation, and most immportantly, is literally hanging by a screw. Periodically Phil has had to tighten this screw to keep the door from dragging on the floor. The screw just can’t be tightened anymore, so Merry Christmas to us with our new back door. On the plus side, we know the benefits it will bring from having replaced the front door in the spring. Air from the heat or air conditioner seems to be held in, and there aren’t the drafts we used to feel. I don’t look forward to disabling the security alarm and then having to have them out to replace the sensor,. The day when the door is to be put on will also be a chilly one, but the benefits far outweigh the short-term negatives.
Meanwhile, I still enjoy our fireplace at night, and despite my goal to hold off on Christmas music until after Thanksgiving, I lost that battle a couple days ago. Phil upgraded his iPhone earlier in the Fall, but I didn’t see the need to do so. I’d rather wait and see if there is some new feature I want first. There wasn’t in in the 6 line, and I’m happy with my little 5. The only thing which interested me would have been more memory. Ive always had trouble interacting with iTunes to get new stuff on my phone. Phil surprised me with a thumb drive which works as it’s own wireless hot spot in collaboration with an app on the phone. Because I’m not terribly sure when the computer will be available, I put the most listened to Christmas music on this drive, so I can hear it on my phone. It’s also much easier to put things on and take stuff off of the thumb drive.
Church and the Malt shop have both continued to go well, and I look forward to how Advent and Christmas spices up both of them. I have only one extra Christmas piano gig this year, and that’s at the IDS crystal Court December 9 from around noon to around one. The combination of the difficult, inaccessible procedures at the Mall of America and a transition in readers made it tough to sign up there this year.
Phil has joined the book club, because he no longer has dialysis on Thursdays. I think he’s enjoying it. We also continue to go out once a month with a little group informally called “Dinner Delvers”
I’m starting to work on the Kragnes Karol, so be on the lookout for it mid to late December. Thanks for reading all of this, and I’ll try not to wait this long and thus have to write this much again. Read the rest of this entry »