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

Archive for November, 2012

major good. minor bad.

There are a lot of good things happening in the Kragnes household. Phil was at work every day this week, and I know both he and his colleagues are relieved. He had a doctor’s appointment with his surgeon who was pleased with his progress enough to give permission for the graft to be used for dialysis. He’s had successful runs both times, and the word is that after three or four, Phil will be able to get that catheter pulled out of his neck/shoulder. I know that will make him feel a lot more comfortable and greatly lessen the possibility of infection. The surgeon was livid when she heard about some of the shenanigans the doctors pulled on Phil regarding pain killers in the hospital and upon being released. Basically, they gave him almost too much and then took all of it away very abruptly. Thus, the screams I reported earlier upon his homecoming. The blood thinners he takes should keep the clots away, and we hope we are now riding into a smoother period in Phil’s health than we’ve had for the past few months.

Many of you probably already know, but in case you don’t, Phil is on Facebook. Apparently, one can search for Phil Kragnes, and he pops right up. I’ve heard some of you find him etc. His original purpose was to educate himself on accessible apps in case students had questions with which he could help them, but I think he’s having fun connecting with people he hasn’t on Twitter. As for me, Twitter is still my social networking tool of choice along with this blog. Facebook is too visual and confusing for me. I am a word woman and avoid interacting with or even being in pictures as much as I can. I have a friend trying to persuade me to get a picture on my Foursquare page. Who cares if I’m the Mayor of the Kragnes Kryb. The king of my castle is home! To some extent, I use Foursquare , although I’m still unsure about its benefits other than 50 cents off of a beverage every now and then. I don’t post Foursquare to Twitter, because I’ve found too much of that on others’ time lines. Anyway, I think I’ll let Phil have Facebook to himself. As some have already seen, he finds ways of using very few words to communicate what usually takes me many more.

A case in point is what happened last night. We had a visit from our friendly fire department. On Thanksgiving it was just Phil and me. We’d planned to have another couple, but one of them is dealing with some pretty heavy duty health concerns. We understood when they had to cancel. We bought a meal already prepared, but the turkey had to warm for an hour. Most side dishes could go in the microwave. Despite how delicious the meal, it was still a lot of work and even more hassle for Phil. Before he began, we talked about what a pain going to a restaurant was. During and after preparations, we vowed that unless we were invited somewhere or had major help, we’d be going to a restaurant for our Thanksgiving meals for years to come. Our kitchen isn’t made for big meals, and even warming things up can really cramp space. Our kitchen isn’t made for more than one person, and when we’re both in there, we have to do a dance and tell each other exactly where we are and what we’re about to do. My help probably would have caused more angst than benefit. He certainly knew he could ask. Standing for long periods still affects Phil’s leg, and toward the end of preparation, it was getting rough. The first minor thing was Phil’s open bag of frozen corn dropping on the floor. I was having green bean casserole, and luckily Phil put what he needed into a bowl. The Black Vac took care of the mess in a hurry. The smoke alarms sounded on Thursday, but we were able to stop things before they went beyond the security monitoring station calling to see if we were OK. Yesterday morning, Phil conscientiously scrubbed the oven to make sure he removed any remnants of whatever was producing smoke. Unfortunately, touch doesn’t always tell the whole story, and despite being a meticulous clean freak in everything he does, he missed some turkey drippings. After the headaches of having alarms sound two times in two days, we were more than relieved when the fire people offered to come take a look in our kitchen. They were very understanding and pointed out where the problem was using the Ove Gloves I just washed. He’ll scrub again and likely get a pair of eyes to check before trying the oven again. Today he’s going to cook turkey soup in the crockpot. We have just enough turkey left over for soup, and the side dishes look like they’ll be finished after one more meal. We ate our big meal about two fifteen on Thursday and then were so full that we waited for dessert until that night. Phil bought a Dutch apple pie, and the last two pieces will probably be consumed sometime today. We still have the pumpkin pie in the fridge. We watched part of a TV series to which a friend introduced me and played some iPhone Yahtzee.

We had a couple of minor electronics crises in the last couple days, and they are the kinds of things at which luckily we can laugh after 12 hours. On Thanksgiving day, my iPhone speaker stopped producing sound. It worked ok in ear buds. Luckily there’s a great Web site for blind iPhone users at http://www.applevis.com which we used to solve the problem. I was relieved to know that someone else experienced this problem and found a solution. Sometimes it seems to us that when I touch electronics, something goes haywire which doesn’t happen to anyone else. It’s not uncommon around here to hear Phil say to me regarding electronics , “Only you could do this”, and in most cases, it’s not complimentary!

Then last night a Windows update caused us to have a computer glitch, and Phil knew enough to help us go back to a previous restore point. Meanwhile, I was checking e-mail on my iPhone. That little thing has become practically my best friend, except when it decides not to talk to me.

Now that Thanksgiving is behind us, I’m starting to think about my gigs. My IDS gigs are covered, but if anyone is interested in possibly driving and sitting at the CD table for a December 12 2:00 PM Mall of America performance, please let me know.

Trying to Light the Darkness

It’s not very often that I discuss openly my beliefs on the devil … Satan … the evil one, or whatever. I know there are far too many people talking about that topic either as an excuse for their own behavior – “the devil made me do it” – or pointing out what they perceive as that entity in others. These are reasons I shy away from talking about it. But I can’t deny that there is some kind of evil force at work in the world. I see too much evil in the world and within myself not to acknowledge there is an opposing force to God.

Sometimes, the subtlety with which this force works is scary! Tonight I didn’t have to play for Mass, so I thought I could allow myself a half hour grace period before beginning my preparations. The 1st hurdle was that Zane took much longer outside than I had anticipated. I tried to do things inside to get ready while he finished, but it still was a struggle. Then a bunch of little things happened dressing after the shower including discovering a sock with a hole. That meant more time trying to find a good pair. At the same time, I was ranting and raving in my mind about things, mentally skewering people from my past and present with my anger and just feeling so grumpy. Part of my melancholy was probably left over from the nightmare I had about Phil actually saying good bye to me, because he was ready to die. By the time I was ready to go to church, I had missed my bus. I had a few ones from the Malt shop left, so I called a cab. My keys hang on my leash and are held together with this fantastic, green, shiny, prismatic stoned key holder my mom gave me. I try to make sure that stone is screwed on tight, but tonight I missed the signs it was loose. As I was locking up the house, some keys and the stone went flying all over the porch. I found one out of three keys, but that was it. Again I almost quit. I knew I was running late for church and would probably miss the readings, so I listened to them while waiting for my cab. the first and third were hard-hitting, apocalyptic-themed readings from Daniel and Mark, and my heart sank further. “Just what I need to hear,” I thought. “More bad news!”

I walked into church right before Mark was read in Spanish, and then with the homily, things started to make sense. My priest’s explanation and the example he used clarified things for me, and I knew that’s why I had come. By Communion time, it barely bothered me when Zane didn’t lie still like he usually does.

As I walked from church to the restaurant, I realized this was the first weekend it is completely dark as I got out of church. There was barely any light when the cab dropped me at the church. This week I’ve been playing with my Iphone searching on the app store. I downloaded many free and a couple paid apps which are based on colored lights. One was a multicolored flashlight, and it occurred to me that since I wear my phone on a lanyard around my neck, maybe a bright yellow light would make me more visible crossing streets at night. I had an enjoyable dinner while reading, and planned to use my yellow light again to wave down the bus. Another Black Lab owner engaged me in conversation, and the bus arrived without me turning on my yellow light.

This week with both of us home has been no less challenging than the one before with Phil in the hospital. As much as I usually enjoy spending time with Phil, when he doesn’t feel good 99 percent of the time, I think it can be a challenge for both of us. His pain is still bad at night, and even though the groans and whimpers don’t persist like at the beginning of the week, they worry me none the less.

We’ve tried to do things with friends to keep things from getting too stale. Tuesday night I met a friend at the restaurant down the block. Wednesday night Phil’s cousins took us to Red Lobster for supper, and as usual, we never had trouble coming up with things about which to talk. He hoped it was a dry run for work Thursday morning, but it wasn’t to be. Friday I had two friends over to visit and talk music music music. We ordered a meal and had lots of fun together.

Phil is determined to go to work Monday after missing two weeks. He’s taking a small shopping trip tomorrow with little walking involved to ramp up for it. I hope he’s ready, I know the change will do us both good, but I worry that he’s taking on too much. At least his first day won’t be a dialysis day. He has a doctor’s appointment Tuesday along with dialysis, so Monday will be a good test run. The appointment is to follow up on the surgery and to determine when the new graft can start to be used for dialysis.

Then we have Thanksgiving on Thursday, and of course I’m thankful that with everything he has been through, he’s still around and fighting for his life. We’re going to order a meal for four from our grocery delivery service, and all we need to do is warm it up. We’ve invited a couple of good friends and hope it’s a good day for the one with health issues of her own. We can put our leftovers in containers and put them downstairs in the big freezer.

I think we’re staying out of the way of black Friday. I’ll start with some seasonal music that Sunday at the Malt Shop. Then my first IDS performance is Saturday December 8 at noon. I have only one Mall of America spot Wednesday the 12th at 2:00, and the final IDS performance Wednesday the 19th at noon. December8th is covered, and I need to finalize with someone about the 12th. The 19th is still open if anyone downtown that day would like to come listen and sit at my CD table.

It’s late, and I need to get a few more things done before I go to bed. Good night.

Phil and Garron are home, and a story

I should sleep so much better tonight, because everyone in is the house. But before I go to bed, I have to make sure my tears are done and my nose is unstuffed.

I was a little perturbed yesterday when I found out Phil was running a low grade fever. Apparently, this is common after surgery. Blood cultures were taken, and no infection showed.

I have been disappointed with and hard on myself today, because I just haven’t been able to do much. I’ve been so cold all day, and I think it’s the extreme temperature change from 70’s to 20’s within a couple days that just had me out of sorts. I couldn’t even get my hands warm which is very rare! Most of the afternoon until Phil got home, I curled up in my warm bed with a book and napped.

Physical and occupational therapy people felt confident Phil was ready to go home after working with him today, and his Coumadin is at the level they desired. He arrived home around five thirty, and Garron got here soon after. Our reader got here at six, and aside from a few stupid pieces of mail that made me very angry, that was fine. Phil was and is in quite a bit of pain on this thigh / surgery site. This is the first day he has had his liner from his artificial leg on for any extended time, and he didn’t realize how much it would irritate that spot. It isn’t on the spot but very near to it. He’s not going to work tomorrow — just dialysis — in order to keep that liner off as much as he can. He probably will stay home Wednesday and wear it for our dinner out. A couple days of gradually wearing it more will be better than starting with an eight hour work day.

Then we had a minor crisis when Phil looked for his headphones and was missing a vital part. I don’t touch that side of the mantle, and the only person who had been near it was our cleaning guy. Phil could tell some things had been moved from the way he had them. Phil was looking all over for it, because it is his most comfortable head set to wear during dialysis. He was pretty angry, and I just wanted to try to calm him down. I tried to make arrangements to have them come tomorrow before Phil left. Finally he looked in his bag and found the missing piece. I called back and apologized.

I managed to make some fish tenders in the oven. It was actually fun to listen to the Mushroom FM Internet Radio station on my Iphone and have the timer on my phone let me know when the food was done. The meal was good, and Phil and I spent the rest of the night talking.

My tears came out of something he told me about his latest stay. As he was withdrawing from the pain medication, he had several hallucinations. He described some to the doctors who thought he might be stroking or having a heart attack, because of the visuals and then some pain in his chest. It was when he was getting tests to make sure he wasn’t that he had the one that made me cry. He felt a big hand touch his nose and in some other way indicate that he was to follow him. He protested that he wasn’t ready to go because of me and Garron, and the presence moved away. This whole discussion began when we talked about how one of his doctors said they were running out of dialysis options. He told me that each time he went through something he thought he couldn’t take, it made him stronger and more willing to fight until he absolutely can’t anymore. He’s been thinking about how hard on me and Garron his death would be, and he told me he’d go through a lot to bridge between now and a transplant. Then we started talking about the fact that he’d like to die and home and the merits of Garron and I finding him verses getting call from the hospital. That’s when Phil told me about this “hallucination”. I asked him if he considered that the presence might have been God, and he said afterward that he had. Talking of his death made me cry anyway, but this discussion really brought on the tears! So I want to make sure I’m done before hitting the sack. Needless to say, it’s been an emotional day.

Phil is clear headed, and we have railings

Phil is back to himself today after a few days of pain medication and then hallucinations from withdrawal. They are now keeping him until the Coomaden blood thinner (sp) is at theraputic levels. Then they will let him go home.

Today is a damp, cold day with highs in the thirties. What a contrast from yesterdays seventies. I am glad the Cody family had a good day to put on our ralings and new mail box on the front steps. We had one raling until last year when the wind buffeted it with the door and destroy it. The mail box is bigger than our other one and is now at the bottom of the stairs. Phil and Dwight shopped for them right before the swelling in Phil’s arm got so bad that he went to the hospital Sunday night. Phil hoped to be home to help with the railings, but he’s excited to see them. People who have seen them tell me they look sharp.

Friday I had friends over for the day, and it just felt so good to have other people in the house. I don’t mind being alone during the day, because I’m used to it, but hate being alone at night. We had pizza, and it was fun to introduce people who didn’t know each other. The three of us had a very good time and plan to get together again this Friday. I also learned how to pplay Roll It (Iphone’s accessible yahtzee game) using two Iphones and blue tooth. I can’t quite get the hang of trying to connect with friends on the net, but that will come. Phil and I will be able to play yahtzee while he’s at dialysis, which is something we’ve both wanted.

I played for church last night and this morning, so it’s time to get my pre-malt shop nap, and what a great day for it!.

good News: a Blessing in Disguise

Today brings more evidence that God probably knows a little something about what Phil needed. Yesterday doctors put chemicals in Phil’s arm to break up the clotsand it seems to be working wear it is supposed to work. Today his doctor had a surgery opening, and he slid right in it to ghet the graft in his thigh put in early. They aren’t worried about him taking the blood thinners, because of the clotting, so he goes in this afternoon for the surgery. Then within a week to ten days, that stupid catheter will come out! Dialysis should work a lot better through the graft, and he should feel better.

found the right person to act as “agent”

I probably should have waited until the problem had resolved itself before spouting off about it on my blog. But we’d just think we had it solved, and something else would happen. Phil found someone at work who has the flexibility to take the paperwork to City hall, fill out the agent form, and help him pick up, fill out, and return the ballot to city hall by three tomorrow afternoon. As someone said to me when I told him, “God is good.” I certainly wasn’t accomplishing this on my own.

who knew voting from the hospital was so hard?

In case you hadn’t guessed by the subject line, Phil is back in the hospital. All of the trauma from going through the scar tissue and the catheter itself has contributed to blood clots and resulting swelling in his shoulder, arm, hand, and the right side of his chest. An ultrasound revealed that only one little vessel was trying to drain it all. He’s on an IV medication to break up the clots, but they are so significant, they may have to go in and physically break them up somehow. Other medications they could try on others are not possible for him, because of the kidney failure. He’s trying to ask doctors to consider moving up the graft surgery, so the catheter can come out soon. However, the de-clotting medication may have an effect on the date for that too.

Meanwhile, when he was admitted last night, he was very upfront about making sure he could vote on Tuesday from the hospital. He was told he was going to be there for a few days and that they would figure that out. Apparently, there was a deadline communicated to hospital representatives indicating that whatever forms needed to be submitted had to be in by noon today. Neither Phil nor I knew of this deadline until it was too late. I just talked to a social worker on the floor, and she was very apologetic about this whole situation and promised to do what she could. I have the process of what needs to happen memorized, but finding a person to do the running between the hospital and city Hall — AKA an agent — is problematic. The agent is supposed to be a person who has a pre-existing relationship with Phil, and that could be a complication too. A friend of ours is bringing the absentee ballot application over to the hospital tonight. It is available to be printed from the web, and social worker has the forms. The agent needs to help Phil complete and sign that form. That form gets run over to city hall, and the agent fills out an agent form while there. Then the agent picks up Phil’s ballot, brings it back to the hospital, helps him fill it out, and returns it to City Hall before 3:00 tomorrow. A lot of our friends either work or are busy in some other way and can’t do this running around. Nor should they be expected to do it. I called our representative’s campaign office, and the woman in charge of arranging disability issues has a bunch of lawyers working on how we can get Phil some help. This whole thing is distressing, and I know Phil will be very angry if he doesn’t get to vote.

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