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

Archive for January, 2014

Phil is home!

Phil got home around 7:30, and Garron got here around 8. It’s nice to hear Phil singing in the shower. We’re both perturbed that nothing seems to be done about the abdominal swelling. A very informed pharmacist also recommended Phil not take one of the medications prescribed for what is at best a very questionable diagnosis. The medication is cleared through the kidney and has nasty side effects some of which do not go away after taking it. The pharmacist is willing to put in Phil’s file that he recommended not taking it. That’s a pretty convincing sign for us that it’s serious. Phil sees a home health nurse tomorrow and has a Eurology appointment on Wednesday. He has decided to forgo the Foley catheter at least until he goes Wednesday, and I suspact they may have a tough time convincing him to wear it. the … areas involved are quite sore, and he doesn’t even have to make a conscious effort to visit the facilities more frequenthely. Though it’s slow, the kidney numbers continue to go in the right direction. Aside from the swelling, which is pretty uncomfortable, he’s ok, and obviously, the hospital wasn’t doing anything to rectify that. We’ll see what eurology has to say on Wednesday.

Shortest blog I’ll ever right

This is not going to be long or fancy, because frankly I’m tired. Phil had scans on his stomach, and results hadn’t returned yet. Tomorrow he’ll have a neuclear stress test on the heart, and I’m guessing it will come back fine. Then he can be transferred to a transplant floor where they can find the answer to the real problem of Phil’s distended stomach and the likely extra fluid which is putting stress on the heart. I may try to see him either tomorrow or Saturday depending on how things go.

My physical was about what I expected. I’m very tired, but am glad I attended my well spouses support group tonight.

Well, it’s just Zane and me, as I had Garron picked up by his puppy people. This day hasn’t been one of the best in the world. It started with not getting much in the way of sleep last night. Over the weekend Phil started complaining of abdominal swelling and bloating. At clinic many of the kidney numbers were going in the right direction. It was the weekend and MLK Day, and the doctors on call didn’t seem overly concerned about the distended stomach like the nurses who were. Then yesterday a bladder scan showed that not all urine was exiting, so a Foley Catheter was inserted to make sure it did. A straight catheter was suggested. This would have meant every time Phil had to use the bathroom, he’d have to catheterize himself to make sure he got it all. A Foley is a catheter which stays in more until things are straightened out. It attaches to a bag which is emptied of urine. The day bag goes around the ankle, and the overnight bag is bigger. However the tube for overnight does not allow for very much body movement. Phil has had plenty of Foley Catheters in the hospital. I’ve never heard him complain about discomfort with it. I grew concerned last night as he said it was uncomfortable. It was also getting harder over the past days to bend over and grab dropped objects or even tie his shoes. Then there was last night! I’ve had many dialysis nights of trying to wait to go to bed until after Phil settles down. Waiting also means not having to get out of bed to go get stuff for him. Last night it got later and later with few signs of settling down. I felt like a traitor when I kept having thoughts that Phil really needed to be in the hospital instead of here. The overnight bag was a lot less comfortable than the day bag. He just couldn’t stay comfortable in bed between the Foley and his distended stomach / bloating. The plan was to keep him on this Foley Catheter until he could be fit in at Urology middle of next week. The visiting nurse who took his Labs noticed the distended stomach but didn’t make any recommendations. He was due to go to clinic tomorrow. He ate a little, but it kept getting worse as the day went on. i said that if I knew who to call and talk to about this, I would. I felt strongly that he shouldn’t have to be so uncomfortable for a week — groaning in the day and crying at night — simply because he wasn’t able to be fit into a schedule. I had the idea of him talking to his transplant coordinator and even offered to do it for him. Phil talked to her, she made calls, and it was recommended he go to the ER. A friend took him for me, because a cab ride sitting in back sounded far less comfortable to him with everything going on. Garron stayed here with me, and we both had a good cry on the floor. I couldn’t find what Phil wanted me to find toward the end and even had trouble putting his shoe on. He left here about 2:45 and was admitted around 7:00. I briefly talked to the nurse who said that his admission was due to his high level of Triponen (SP) which indicates a heart attack or heart stress of some kind. Both the nurse and I are guessing the extra fluid onboard is probably the main cause of this number. So tomorrow I do this physical exam. I hope it goes as well as the dentist did. My rides are not ideal. The appointment is at one thirty, and they couldn’t get me a ride home until 4:30. Then tomorrow night is the support group. I definitely need it after all this stuff. Leading to Phil’s admission.

Since Phil Has Been Home

Since Phil has come home, I have hardly looked at e-mail so plowed through and deleted some tonight. Phil and I have both have some dark and light moods which have come and gone quickly since he arrived home Thursday. I managed to get him rides to our monthly “dinner delvers” group on Saturday night —especially because it was at our favorite Mexican place. He’s been taking Metro Mobility rides every day to the Infusion center and to get labs drawn. Later this morning is the last of those, and then a nurse comes out three times a week to draw labs. Even getting on and off the Metro buses has been somewhat of a struggle — especially given the glaze ice —, and there’s no way he’s ready for bus travel. He’s had some post-surgical swelling which has made it hard to breathe. The kidney is not functioning fully yet, but the numbers seem to be going in the right direction.

This is my health week from hell with a dental appointment later today and a physical exam Thursday. These things stress me out, because I know in their ways, the doctor and dentist plus assistants will tell me what a bad patient I am. Phil’s surgery and recovery has meant that I’ve probably been worse than usual. I hope they don’t pile the guilt too thick, because they night be surprised what is given back to them. Can we say, “I am not in the mood”?

Thursday night is the Well Spouses support group, and by the time I get through my health appointments and the next few days, I’ll be ready. I was awakened quite suddenly at four forty by Phil’s dog jumping on me. Garron gets anxious when Phil’s screaming. He was in some significant pain and was scrambling for the Tylenol which was not where he put it. I don’t take the stuff but managed to put my hand right on it and hand it to him. I fed and relieved the dogs and watered their bowl and the humidifier before crashing in bed again.

The other big time we almost killed each other was after dinner Saturday night. We were waiting for our ride, and Phil and I each had an idea of where to stand to make it easiest for the person picking us up. Mine was based on visibility. If I was right at the corner, he could see where we were no matter how he approached. Phil’s was that standing at the corner was a bad idea, because our driver would have the back of the vehicle in the intersection. Unfortunately, he was so angry that he lost orientation and unintentionally crossed the street despite the snow mounds. It was night, so I was scared seeing the light was not in his favor, and his tone of voice was not the softest or kindest to me or his dog either.

Lest you think I have been an angel, that’s not true either. I don’t tend to yell, but there are quite a few entities in the last few days which have unknowingly taken a blue streak of cursing — as witnessed by Phil, the dogs , and these four walls —because of their insensitivity, impatience, or both. I’ve gone from a trigger verbal temper to being a bundle of free floating anxiety to just wanting to hibernate in a warm bed and forget about everyone and everything. I forgot to ask Phil to wake me up before leaving Sunday morning thus oversleeping and missing my ride to church. The company cancelled my ride home, so finding a way to get there and back added to my anxiety. The ride home took a while because of a long story, but it did mean meeting some new friends.

There are more things on the good side. Phil’s supervisor brought over a great supper which will last a couple meals for us. There was some great salad and a wonderful casserole with chicken, rice, cheese, creamed soup, green beans, and water chestnuts. There were also chips with homemade guacamole and cookies for dessert. I also had a couple of sets of friends come hear me at the Malt Shop last night which really bolstered my spirits.

Good news

Happy to report that Phil’s mental train is back on the rails. He has some visual hallucinations which he knows are not real, but the tactile and auditory stuff seems to be gone. Had a ten minute phone conversation with him, and his lunch came. Urine production went from 70 cc’s every 4 hours to 125 cc’s per 4 hours today. Prayers for pee are working!! Still needs to produce more a day to function “normally”, whatever that is. He may also be moving to a regular florr in the next day or so and then home in three or four days, if nothing else goes heywire. I’m so glad he can advocate for himself and I’m encouraging visitors.

Brief Update

Very briefly … though Phil is off the pain meds, the hallucinations and sleepiness are not gone yet. I asked nurses to look at side effects of other medications to see if there’s anything which can be adjusted. His level of an anti-rejection medication Prograff was high, so that will be reduced.

I am a half hour away from being picked up to go to the Malt Shop as I write, and despite talking and laughing on Skype for way too late, I think my two hour nap and a large cup of Mocha Nut Fudge will get me through it.

After this morning’s Mass, my canter took me for a quick Apple Store run. I’d been meaning to get some replacement Apple EarPods, as I was using Phil’s. Then I managed to lose his, but luckily I knew they were in the house somewhere. After checking out all the usual places, I was frazzled. Now at least I have back-ups. After taking a quick look around, they were spotted … in the dirty laundry pile on top of the hamper, which is way taller than it ever should be.

Finally, I continue to ask your prayers for pee, and I told Father about my prayer request. He took it further and named a familiar hymn in which one could substitute either of two synonymous words for urine in the first line and title. The second altered line is

“And let it begin with Phil”.

Hospital visit

I am still mad about my hospital visit. Last night I found a message on my phone from a social worker who talked about Phil being released early next week and setting up rides to the infusion center. I’ve already had a mutual therapeutic rant about social workers with my sister-in-law, so I’ll spare you that. I felt next week was too soon last night, and from what I saw today, I felt even more so! The classes were cancelled without them calling me which really upset me. I could have had the lady who took me to the bank bring me home instead of incurring a $15 cab ride.

However, in some ways, it’s good I went. Phil was being prepared to go down to dialysis, and I waited with him for twenty minutes before transport showed up. Initially the plan was for me to go down with him to visit. The man couldn’t talk to me for more than a minute or two without falling asleep. When breathing out, he would moan every time, and I’m guessing this was because of the visual and tactile hallucinations from pain medication. He managed to answer my question about infusion enough, so I could talk intelligently to his nurse later. When transport came to get him, I decided I needed to stay behind and talk to his nurse. I was in tears. I told her in no uncertain terms that I didn’t want to see him come home like that. I told her if he was going to have to take rides to infusion in the morning and dialysis at night acting like a zombie, he didn’t belong at home. She agreed and reassured me he wouldn’t come home in that condition. In fact, they want him up and around and are going to be reducing the pain medication to have that happen. I’d rather have him have a little pain than not be able to advocate for himself. He is not moving from that floor yet, and I agree he needs more attention than on a regular floor. His family will be on board with a few more calls to try to keep him awake especially tomorrow.

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