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

Archive for January, 2013

Phil and Garron are home

Everyone is probably going to be shocked — as I was — when you learn that Phil is probably going to stay home tomorrow instead of jumping right back to work after being in the hospital. This is contrary to his usual pattern, but he feels he needs a little more recoup time before diving back in again.

He and Garron got home around seven fifteen.
Yesterday he was going to the bathroom a lot, and he wondered whether the antibiotics were causing CDIF or another kind of bacteria. Then the head nurse made things even more complicated by discarding a sample in a hat, which meant a longer turn-around time. It seems those tests came back negative.
Tests did show that Phil had a pretty rare blood infection that usually starts as a bacteria in the mouth or stomach, so the wisdom tooth extraction could have been the starting point. The last two blood cultures came back negative, but this is another bug which needs to be prevented from coming back with antibiotics. He once again had to go around with the doctors about his care. They wanted to put a pick line in and send him to a rehab center for six weeks. Then he reminded them they’d been down this road before and of the solution of having antibiotics given at dialysis. The doctors readily agreed to this plan and released him. He’ll get antibiotics every time for six weeks.

This bacteria has a habit of attaching to heart valves, so they want to schedule a Trans-Esauphagial Echocardiogram (TEE). This is the test in which they put the camera down Phil’s throat and look at the heart. He had one during a recent hospital stay, and with the sedation, the TEE has become much more humane than twenty years ago. This will be done on an outpatient basis. Because of the sedation, we’ll have to arrange for transportation home for him. Hopefully they’ll give us enough time to make the arrangements when they schedule it.

We have had at least one hospital stay a month for the last four or five months, and I think all of us want things to get back to normal. We need to sort out Phil’s absences from work which will be a bit hairy, but if he can go back steadily, we should be OK.

Here we go again: another hospitalization

I was just telling my mom this morning that although Phil and I have been touched by some kind of bug, we’re trying to have things be as normal as we can. Last Saturday, Phil was violently ill in the morning with a 101 degree fever., but by afternoon/evening he was feeling a lot better. Sunday morning was OK, but by Sunday afternoon, he was feeling poorly again. Phil stayed home from work not feeling well yesterday,. Today he fortuitously had a doctor’s appointment with an infectious disease doctor. The fever seemed to come and go, and we thought it was gone, until Phil woke up this morning. He’s had a persistent cough all week, and it’s made his back muscles hurt. After the doctor’s appointment, he’s had to sit all day to have tests performed. The fever has been rising, and he’s having fluid drained on his knuckle. Doctors suspect that the infection has camped out there among other places. His sinuses are a little thicker than normal, but nothing serious. If the fluid looks like infection, he’ll be admitted put on IV antibiotics, and if not, they have to figure out what’s wrong with the knuckle and probably still do some IV antibiotics. I have coordinated getting Garron out of there as quickly as I can, and he’s going to stay at the puppy camp (our friends’ with their dogs)at least for the weekend. I play Saturday night and Sunday morning mass, because the music director is out of town. in addition, I practice with a canter for Mass next weekend plus do the Malt Shop. This means Zane and I are going to be gone for hours at a time, and Garron would be alone a lot! Even if my friends need to leave, at least the other dogs are around to keep Garron company. With the church music director gone , I’m also on call for any funerals that come up at church next week.

Whatever this bug is has been even more erratic for me. Tuesday I had a horrible headache which Aleve couldn’t tackle. Wednesday and yesterday morning I had head cold symptoms which were gone by afternoon. Then last night I was sitting in my chair when I just started to sweat profusely! It was the worst possible timing, because we had the rotted window sill in our shower replaced. Because I had no idea it was going to take more than one day, I didn’t shower before the handy man took the old one out. There was just a garbage bag in that spot, and he advise not shower if at all possible. Yesterday, he put in the new one and painted it which meant another whole day without showering. Then the sweat thing hit, and I felt even more grimy. I have no idea whether this is part of the bug or my very first hot flash. “The Change” apparently comes earlier to women who do not have children, and my doctor has speculated that it could happen earlier for me as a result. Personally, I hope it’s just whatever this bug is.

It’s hard to believe January is already coming to an end, but even with Lent starting mid-month, I’m looking forward to February. A friend and I are attending a concert February 4 by Ginny Owens – a Christian contemporary singer who happens to be blind -in a coffee shop atmosphere. I’m really looking forward to this, because though I’ve seen her before, it was definitely a concert hall. This willl likely be much more intimate. Phil also has plans for us to get together with one of his friends next Friday – assuming this is a short-term stay.. If things settle down a little, I’d also like to host a Scentsy party in February. It strikes me that as of February 14, we will have been in this house for seven years. I definitely wouldn’t have chosen home ownership without Phil, but I do love living here! Usually at the end of February, we’re done with the below-zero temps. There’s still plenty of snow possibilities, but the daylight is much longer. I am already noticing that it’s a little better after a month of it coming back. I still have plenty of fireplace time, which is great. It’s enhance even more, because Phil surprised me with a pair of wireless gaming headphones. This means I can use Skype on the computer even more portably and take advantage of more features than the app on the iPhone. I’m still wearing down my iPhone battery at least once a day with all kinds of things as is Phil. We look for social opportunities where we can, but I also enjoy the times we spend together talking, playing, games. Or just reading in companionable silence.
I’m OK during the day, but the nights with him gone are long. I hope this is a short stay and that we get a longer period of things being OK than just a week or two.

photos, social media, electronics, plumbing, and Phil’s health

Well, if I did it correctly, my public profile on this blog should have a photo of me and Zane in it — if not now, very soon. Aside from my Web Site (which is in need of an update) this will complete the social media I use which have spaces for photos. It all started last week when the woman from social media site requested that blind people consider at least putting up a profile photo. Some blind people are resisting the idea of having photos, and initially I did, too. But hey, if it helps the sighted have a better idea about who I am, OK, I surrender. Some blind people wanted to take their own pictures, and that’s possible on the iPhone. Phil has done it, and the picture of him on his Facebook and Twitter profiles is one he took himself. Sure, I could do that, but I really preferred to have someone else take and help me pick the right photo for my profile picture. Our reader arrived back from Peru this week, and I asked her to use the camera to take various photos of me and Zane. Other blind people are taking photos of places they are, etc., and although I know it’s possible, I don’t know that I’m that into it. The people who are doing this say they really don’t care what others think about how it comes out, because it’s something they did themselves. I just can’t share that sentiment and would rather have quality photos on my social media presences.

Speaking of social media, I’ve really gotten into Skype in the past couple weeks.
I’ve had a Skype account for quite a while on my phone, and that’s exclusively how I use it. I use my wireless keyboard in the living room and don’t want to be tied to the desk with a microphone. With the lanyard around my neck and a microphone on some head phones, my Skype is extremely portable in the house. I’ve always been mystified when playing games with others about why they want me to get on Skype with them to talk. I have found out why. I think I’ve written about a new game Phil and I are enjoying called Farkle. It’s on a gaming site for blind people called RSGames, and we now also have it on our iPhones. The iPhone version only lets us pass the phone between players or play against the computer. . I was invited to a big Farkle game by someone I didn’t know. Eventually, he learned I had Skype, and he patched me into a conference on TeamTalk. Through that conference, I met another blind couple who live about an hour away in Wisconsin. The woman and I have chatted on Skype and found we have a lot of things in common. They’re a little younger than we are — in their thirties — but I’ve enjoyed talking on Skype while playing on RSGames with them. Last night Phil got on Skype for the first time, and all four of us played Farkle. For those who have never used Skype, I think the sound quality is better than the phone. This couple lives in a small town and are newlyweds of a few months. I don’t envy them, because as much as we complain about transportation in the city, transportation for blind people in a small town really stinks. And the job prospects! These are some sharp individuals, and I really hope they are able to find employment where they live. On the plus side, I was startled when on Skype with the woman, and her husband had computer problems. Despite it being midnight, they had someone with eyes at their door to help them get the computer speaking to them again. We’ve had to call on friends for emergencies, but that would never be something we’d be able to do and expect to still keep our friends. The combination of Skype and RSGames really brings about a social experience which is pretty similar to being in the same room.

We had to have a visit from the plumber, because all of the sudden our bathroom sink started backing up. We had a friend and then the plumber come in with snakes, and they weren’t able to clean it out. A guy from a draining company who works hand in hand with the plumber came out and worked on it with a more aggressive snake. He said it was one of the worst he’d seen in a while. He told us it was likely it hadn’t been done by the last house owners, and that’s why we had trouble. We’re also watching our tub drain. We’ve been using draino, but that stuff can eat away at the pipes and could cause headaches down the line. There’s a drum trap in there instead of a p-trap, and I guess those are harder to work with. We’re definitely going to ask a few more questions and try to hold this off for a while if we can.

I have been waiting all day for my new Victor Stream to be delivered. I have tried a couple alternatives to see if I could be without one, and the answer is no. The behavior or my Stream got worse and worse, and eventually a tech support guy told me there was a short in the power button. As we suspected, it would cost almost as much to get it repaired as to get a new one. A generous soul was not using hers and gave it to me. Unfortunately, it didn’t work at all for some reason. Another person offered to sell hers for a reduced price, but hers is two years old. Given that the power button issues have to do with age and heavy use, I decided the cost difference between getting a new one and buying hers was not that significant. I have acquired an app for use with a book service to which I subscribe. National Library Service has a lot of books for Blind people narrated and in Braille, but because this service is about people scanning books, this service has even more, and the latest books are available much sooner. The synthesized voice in the app is very nice, and I’ve already enjoyed a book on my iPhone. Still there are things the Victor Stream has which still makes it something I heavily use. There’s speculation about a new model coming out soon, but I’m not convinced it will have any features I need.

Usually, I put Phil’s health news at the beginning, because I know many people are keeping track of it. Since the health news is not as dramatic, it’s coming at the end. He had that split tooth pulled the Friday after the New Year by an oral surgeon. His jaw hurt for a while, but things seem to be settling down in that area. We still have some of the usual dialysis things. Two nights ago, he awoke with one of the worst cramps he’s ever had. It started in his leg and traveled up his back. I’m convinced dialysis may be pulling too much fluid, because he many have gained a little “real” weight (as opposed to fluid retention weight). The ice and uneven surfaces have made an area on the side of his knee with the prosthetic leg very soar, and he tried to stay off of it as much as possible yesterday. He’s taking rides into work, which eases my mind a little. One of his hands continues to give him problems, but it’s not related to lack of circulation. He’s in process to go see if he needs to have the trigger surgery he had a couple years ago in the other hand. The important part is he’s in pretty good spirits.

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