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

Archive for October, 2012

the last 36 hours

As I usually do on Tuesdays, I went downtown for a couple things, and one was coffee with a friend who also happens to work with Phil. He told me Phil was feeling rocky, and I knew that was probably true. Because of the built-up scar tissue, the doctors really had to bare down to get the catheter in his body on Monday. As a result, his chest, neck and arm are swollen.

I had a joyous moment on the way home from Downtown when I pulled up a GPS app on my Iphone. The bus driver was quiet when calling stops, and I wanted to see if I could track our progress. Wow! I could, and in combination w/ the driver speaking up a little more, I could assess that the app was very accurate. I was so happy and can’t wait to try this in cabs and Metro Mobility. It read the addresses we passed, and I knew when we crossed the street, because the numbers went up. I also marked home as a favorite spot. Zane is pretty good spotting the gate, but it was amazing how accurate the app was finding our address!

The rest of the night was pretty relaxing, until Phil and Garron arrived. Phil staggered in the house sobbing and incoherent. I got the dogs out, and Phil was so upset that Zane was too frightened to come in for a while. His is probably anthropomorphizing to the extreme, but Garron was by me as if to say, “I got him home, but I don’t know what to do about this.” Phil quickly fell asleep on the couch, and his breathing was ragged. I was plenty scared and really wondered whether I should be calling the paramedics or at least some friends to look at him. Eventually I got little pieces of the story. I knew from other bouts of this stuff that sleep was really the only thing that helped. His breathing was so ragged that it really frightened me! But we had to get his evening medications in him and get the cases for the next day sorted. Once I got Zane settled, I let Phil sleep for a while, woke him in an hour and a half, and got more of the story about how bad the swelling had become. The pain medication patch and a rough Metro Mobility ride made him extremely motion sick. Although the patch wasn’t ready for his hand problems, he tried it to manage pain from insertion of the catheter. Needless to say, that’s one more narcotic he won’t use — at least in that form. He tried to put his medications in cases but quickly realized he had to lie down. I let him sleep for another hour or so before deciding we both really needed to go to bed. I woke him up and got bottle by bottle instructions regarding in which cases his medications were to be dispensed. Between instructions, he’d fall asleep for a couple minutes.

I woke up this morning to him frantically asking me to get the dogs out and telling me he’d been sick during his bath. Everything feels terrible when he doesn’t feel good, and he discovered that in the hurry to get to the toilet, he didn’t get the soap off his back. Twisting was hard because of the swelling, so I gently — and then not so gently at his request — got the soap off with a wash cloth. Phil sat on the couch to try to recover and fell asleep. This morning the breathing wasn’t ragged, and he asked me to wake him at six thirty. He couldn’t survive the last things he tried to do before getting ready for work, so after leaving messages for his co-workers, he came back to bed and basically slept until four this afternoon. He still felt rocky, but the more he was up the better he felt.

When Phil turned on the oven to make dinner, the most horrid smell came out of it! Phil opened the windows, but smoke detectors all over the house went off. We got the call to make sure we were ok, and the monitoring company said they would disable the alarms for an hour while Phil finished cooking supper. But the alarms kept going and going! We called the company back, and suddenly they couldn’t pull up our file with our password. So While Garron was in the back yard and Zane quickly went out front, Phil and I each tried to get the security company on our phones. The monitoring people transferred him to the wrong company, so it took a while to track down the problem and get the alarms to shut up.

Needless to say, we did not use the oven for supper. By this time, Phil had a terrible headache and was feeling rockier. He talked me through what he wanted on his salad, and we had salads and Chex mix. Then Phil worked with our new reader Sarah Grace, while I was on trick or treating duty. This was the first time Phil and Garron met Sarah Grace, so it was good for them to work together. We had only about half the trick-or-treaters we normally do, but since we give 50 cents per kid for their bags, left-overs are no problem. We suspect the low turn-out is because of increased audible gun shots in our area. We used to hear them once a year or maybe six months. Now it’s more like once a month or two. One of the last things Sarah Grace did was check our oven to see if there was anything she could find to justify such a horrid smell. She found it!

I have to backtrack to a Sunday morning a few weeks ago. Phil often pops cinnamon rolls in the oven on Sunday mornings, and he remarked that we were missing a roll. He thought perhaps he’d accidentally made two in one, and we thought little more about it. When Phil was gone, I almost used the oven but decided I could be satisfied with microwaving what I needed. I am so glad I wimped out, because despite the chaos of two of us and the dogs, something like this really would have scared me with Phil gone. There was also a little relief in learning that I’m not the one who dumped the roll in there. I remember taking something out of the oven for Phil recently and strongly suspected it was me who caused all these problems.

Needless to say, I’d be perfectly comfortable not to have such eventful days for a while. The pain of the catheter is now an ache, and although the swelling is slowly going down, Phil’s a little worried about it. He is concerned that his doctors would over react and plunk him back in the hospital which is why he’s trying to deal with it himself. Since I don’t hear the ragged breathing anymore, I’m not bugging him about it for now, but if it doesn’t get better soon, we’ll revisit it. He’ll need more time to fully recover from the motion sensitivity, but hopefully by tomorrow morning, he’ll be recovered enough to go to work.

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Back to fighting health wars after a great, normal weekend

Phil and I have had have an awesome couple of days since he came home yesterday morning. I had planned to get him home by afternoon and had to scramble for a ride for him quite suddenly late yesterday morning. The couple who kept Garron were able to help us and get Garron home soon after Phil arrived. Phil and I talked all afternoon, and then I got ready for church. I had a little health snag involving some bleeding which was a bit uncomfortable. It resolved itself after church and our night out to our traditional date-night restaurant., It’s so rare that we get to go on Saturday night because of dialysis. I wasn’t going to let a little discomfort ruin the evening. I am fortunate to have a doctor who is willing to talk to me by E-Mail, phone and/or text. Though things have resolved, she asked me to come in tomorrow. Phil and I spent the remainder of last night in front of the fire talking and doing more Iphone stuff, but it was fun. We spent some more time together this morning working on some more free ring tones. I went to bed, while Phil went to the Apple store to get a couple Iphone accessories.

When I woke, Phil was listening to music. Groceries came while I got ready for the Malt Shop. I couldn’t find my “earpods” — the fancy name for the enhanced ear buds which came with our Iphonse . Phil ended up letting me use his and later found mine for me. I’m listening to the Country show I hear every Sunday night, while Phil is putting his clothes away. We are both apprehensive About the next chapter of Phil’s health war. Tomorrow he goes into have yet another catheter put in for dialysis over the next two weeks. our friend Lisa is going to puppy sit and probably bring Phil home after the procedure. I have a back-up ride set-up if that doesn’t work. The questions on our minds are the following. 1. Where are they going to put it? He’s had so many
that there is a lot of scar tissue. The scar tissue makes it impossible to get them in the same place twice. He assures me that in the unlikely event that my source was right about putting the catheter in his thigh, he can handle it for two weeks. 2. How much pain is there going to be? That will depend on the location and the sensitivity of it. 3. How is he going to fight the pain and how long will he heave to? The pain pills have nasty side effects for him, and until last week or the week before, he had awful pain in his hand. That has dissipated, but when it was at it its worst, doctors prescribed a patch for Phil. The insurance company grumped about it and stalled it some much that he just picked it up yesterday when leaving the hospital. He’s going to talk to the doctors about it and the other pain medications he has here. 4. Will we make it through the next two weeks without an infection while fighting off the last one with antibiotics given at dialysis? We hope so, because although Phil is feeling relatively good now, he warned me that given the last week, he may not have the resources to fight off something else nasty. I didn’t know that when he got to the hospital last Sunday, the doctors were having so much trouble getting his blood pressure up. They even told him that if they couldn’t get it to respond, he wouldn’t survive. I’m glad I didn’t know that! It just makes these next two weeks with a catheter as a bridge to the graft surgery feel really critical. And then putting all of those other things aside, I’m asking myself how I can best be with my husband through this. I feel like I just got him back this weekend after weeks of pain from the hand and then this last week’s illness. And now here we go again. I feel helpless knowing there’s very little I can do for him when he’s in the amount of pain he has been and probably is about to be again. Pain minimizes his patience and maximizes his temper, and unfortunately, though I try not to, I can do the same.

We both have a couple of fun things coming Wednesday. Phil had to put off a birthday with a friend, and he’ll finally meet him for lunch. Then that night, he’ll meet our new reader. She came last Wednesday and observed our other reader who needs a break. This girl is going to be fun! Also, it’s Halloween, so we’ll have the quarters ready to give to kids. We have to keep our reputation up. With the amount of gun fire increasing in our neighborhood (including some Friday night when Zane and I were by ourselves) I’d rather have people think of us as some of the good ones. Phil teaches a course that day and plans to wear his German Shepherd mask to greet his students and our Trick-or-Treaters.

update with much better news

Phil told me he had bad news and good news. The bad news was that he was going to be at the hospital an extra night. They want to give him a good dose of that antibiotics. If that means he comes out better, that’s fine. He’ll be arriving home sometime tomorrow afternoon.

There’s a lot of better news on the horizon. First, both the picc line and the temporary catheter are coming out before he leaves. This means he may be able to enjoy a few showers before another catheter is put in on Monday. The second bit of good news is where the catheter is going. Phil understood that the catheter will not be going in the thigh as I thought. He says he’s going to make sure of that! This means he can bathe etc. Finally, the doctors found an antibiotic which will be effective on this bug while given only three times a week. This means that when he gets dialysis, he’ll be infused with this drug as well. So he’ll still get the graft on the 15th, or at least that’s the plan for now. We just have to pray this drug keeps the infection at bay while he wears this catheter for a few weeks.

Phil’s meaning of Life.

One dear friend wrote and told me that she doesn’t know what to say, and I’ve had people tell me this on the phone too. We don’t expect anyone to have answers to these extremely complicated questions. But we have yet another complicated question to add to the mix today.

Phil is currently taking an antibiotic by IV for the blood infection every six hours at the hospital. Doctors are recommending that Phil move to a rehab center for four weeks in order to get the IV antibiotic every six hours. Under most circumstances, someone — either the patient or a relative in the home — could be trained to do this. But we don’t have a situation like this. It’s not something either one of us can do, because we can’t see the stuff going out of the tube or watch for bubbles in the tubing. If I was the patient, I would comply with the doctor’s wishes. If I had a job, I’d see how much of it I could do by computer and phone for the time I’m there. But I am not the patient. Phil has said he absolutely can’t endure four weeks of institutionalization. He wants to be able to come home and be at work as much as possible. He basically feels pretty good, so slowing hinm down is not something in which he’s interested.

I’ve always said I would support decisions like this even if they are risky. Would I do the same thing in his shoes? Probably not. But the restrictions this would entail are too much for himk, so I’m supporting him in taking chances.

The tricky thing about this blood infection is that it can kill, and it can do it quickly. He was asked if he understood it was risking his life, he said yes. Being basically imprisoned and away from me, his dog, his home, and his work site isn’t life for him. He is asking for them to come up with an alternative solution. He’s willing to go into the infusion center for treatment if that’s an option.

very confused and angry too!

I have been worried when informed Phil would be coming home for the weekend. But what’s really confusing are the reasons they may be bringing him back in. One theory is that he’s going to get the artificial graft we’ve been wanting. Unfortunately, we also got a call supporting a second theory that he’s scheduled for an insertion of yet another catheter. He’ll have another dialysis run tomorrow, and they’ll take out the temporary port afterward. He will come home with the pick line they put in today, because they may want that access next week when he is back in for whatever procedure they end up doing. I can’t imagine my husband having to live two or three weeks with this thing hanging out of his Thigh, and I think it’s relatively near the groin! He can’t get it wet, so bathing probably will be out as will showering. Phil is extremely conscious of being clean, and of course, cleanliness helps little infections from going into the catheter, too. I believe given all that he’s experienced this week, they are actually considering another catheter and in a place where it will be harder to keep clean. Of course, his inability to get it wet affects the rest of his body’s cleanliness too.

And does this cut out any last bike rides for the year? If the graft waits until the 15th, we’re going to be near when the snow starts accumulating. It will really upset him if all this takes one more pleasure away. And speaking of pleasure, … I won’t go there, but I have questions about that too. Chances are no one will talk to me, and they’ll tell Phil as much as he absolutely needs to know. Then he’ll have to figure the rest out for himself. I know it’s a paranoid thought, but I wonder if they want him to give up with all of the barriers to a normal life they are placing before him right now. One less person on the kidney list to deal with. That probably sounds beyond twisted, but I am mad in case that isn’t apparent. It’s inconceivable that they do this! It could be there are things I don’t know about which will help, but right now, I am not seeing them.

There’s one thing I know though. He’ll do whatever they throw at him just to prove them wrong about giving up. I’ve had more than one person tell me Phil is the most resilient person they know. I hope and pray this resiliency pulls him through yet again.

Fever broke but low spirits

On Monday, the doctors definitely found the bug in the catheter, so that came out. Yesterday the fever broke. Still the doctors wanted Phil to wait one more day for dialysis to assure that the infection is completely gone and won’t spread. Dialysis will happen today, which means inserting a new port somewhere somehow. He’s unhappy, because he can’t eat, and he can’t eat because he’s going to be sedated. This says to me that they are probably going to place a catheter in his thigh for three weeks, until the graft surgery on the 15th. Because it’s going in the thigh, keeping clean may be a challenge. No more bathing, because that will get it wet, and the same for showering. People put plastic over catheters, but with the amount of hair he has, pulling that off each time would be excruciating. He hasn’t said any of this to me, but it’s reflected in his bad mood. Holding the phone is still not comfortable, so calls are more work than he wants right now. These next three weeks are going to be a challenge! Thank you for your thoughts and prayers.
Rebecca

progress and regress.

The week before last, we had both our security alarm and our CO2 alarms go off because of low batteries and age respectively. Still, It felt like things were getting on an even keel. Last Monday we had a fun evening with some new friends from out of town. Phil planned a bike ride during the week and one on the weekend. We also started going to our Mexican place again. Since opening the artery on his arm, blood flow to Phil’s hand has been good, and the visible evidence of the circulation problems has disappeared. There was some pain, but even that was getting tolerable without pain pills.

Saturday while Phil was at dialysis, I went to the birthday party of a friend. When I came home, Phil was complaining about a twinge in his shoulder when ordering groceries on the computer. Neither of us slept well. I didn’t realize my sleep equipment needed to be replaced, and the shoulder pain kept getting worse. I woke Sunday morning to the sound our thermometer makes when it registers a fever. Then I understood. Another catheter infection. I had to immediately start to get Phil to realize that he couldn’t go bike riding with a fever. He cancelled with his pilot. Then the major battle began. I tried to tell him that the sooner he got a cab to the hospital, the sooner medical staff would deal with it. Also it wouldn’t be able to take hold. He wanted to hold out until Monday morning when he could get a referral from the transplant clinic rather than going through the ER, but I knew we wouldn’t be waiting that long. Groceries were scheduled for 4:15, which was also the time my ride to the Malt Shop was due. He asked me to cancel going to the Malt Shop and stay home to help him put away groceries. Then he went to bed. Instead I called and cancelled grocery delivery, because I was pretty sure we wouldn’t want to deal with that.

Two hours later, Phil woke in severe pain from his shoulders to his hips. He couldn’t move because of the pain, and his fever had risen so much he was hallucinating and stuttering. I had called our friend Lisa, and she called back. She and her husband came over, took one look at Phil and asked me to call an ambulance. We got the dogs outside when the ambulance showed up. Phil walked to the stretcher, which they brought as far as they could give the narrow confines of some areas of our house. Lisa and her husband took Garron home to “camp puppy”. They have two other dogs, and Garron always seems to have a good time when he’s over there. I think the other dogs keep him entertained and distracted from thinking about Phil.

Zane and I went to the Malt Shop as normal. Before going, I talked to Phil’s nurse and a doctor. Doctor’s really seemed to listen to me. Phil told me his fever was down to about 100 last night. He’s receiving antibiotics through his catheter.
When the cultures come back, they are going to find infection in it, and that will have to come out. We just don’t know what happens after the infection clears. He’s scheduled for an artificial graft to put in his leg on November 15th. Phil hopes the infection can be cleared and then the surgery will be moved up, rather than trying to find another place to put a catheter. The Reality is they’ll probably have to place another catheter for the three weeks between now and November 15.

I’ll keep you updated on what happens next. Thank you for reading.

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