Sunday, August 30, 2009

Dad is AWESOME!!


Aside from the fact that he told me Happy Birthday this weekend said he wasn't on the ventilator anymore, I think he is doing really good. I said before that when he sleeps, it seems like an entirely different story, but when he was awake this weekend, he was very much awake.

We drove up Saturday morning. We found a campsite online in Hazelton that we went to. It is really cheap and a great place. Its only 15 dollars a night for electric and it is very spread out. You aren't camping on top of one another and it was really quite. We ended up next to a little river. I'm not sure what river it is. The place is called Fontana. It has a wildlife refuge there that was pretty neat. I took some shots with my iPhone.








It is 10 dollars a night to camp there if you don't use electric and they have warm showers there. I haven't slept that good in a long time.


Anyway, dad was pretty sleepy when we got there on Saturday. He woke up in the evening and we attempted to watch a movie that he ultimately made us turn off. It kind of sucked. I don't think I even remember the name of it. We then put it in Haunting in Connecticut. I thought that was pretty hokey, but it seemed to hold his attention.


I am getting much better at reading his lips which is making our conversations much easier. He asked me to remove his TED hose from his feet. I really shouldn't do it, but I know how much he hates them, so I took them off for a bit. I took them off the last time I was there also. I used to work in wound care, so I always take a look to see if I notice any skin breakdown, and guess what?? I found some.


This is on his right heal. I immediately told the charge nurse and she came in to inspect it. She ordered to keep his TED hose off that leg and dressed the area. It really irritates me when these things happen because they ARE preventable. In this case, I actually think that maybe his heel is rubbing up against the chair when he sits in it. He has been in the type of bed that he is in now for a long time, so I really don't think that is the cause. Him getting up in the chair every day is new, so I think it is the chair.


I was looking in his closet and I found that they had altered his shirts, so I left a note for them to make sure that they put him in one in the morning. When we got there, he was all cleaned and wearing it and smiling!



It is hard to tell in this picture, but he really is smiling.

I brought up some pictures from the fire department that Scott Burger gave me to put in his room. That made him happy. I put one on the window next to his bed and hung the other on the wall next to the TV. Thanks Scott!!

I talked to the administrator today about moving his TV or his bed again, since they hadn't done it yet. He assured me that they would do it Monday. I hope they do. Dad really likes his TV and it is kind of pointless for him to have one if he can't hardly see it. I have to turn his bed at an angle to get him to see it. When I'm not there, I know they push him back against the wall.

He had a lot of pain in his left arm today. He usually doesn't complain of pain ever, so I know he really must have been hurting. They ordered a muscle relaxer for him and a little bit of ativan to relax him further. He told me he didn't think he was able to do anything and I assured him that he was doing so much better! I really think that he is! He is just so much more alert when he is awake. He hasn't had any temperatures while he has been there and I can tell he is getting stronger. One of the staff came in and said hi to him and he waived at her. I haven't seen him do that in a long time.

He knows this is going to be a long time, but I assured him our goal is to get him home. I just read that book, A Stroke of Insight. It is about that neuro-anatomist who had a stroke and was able to recollect the entire process of it. It was really amazing what the brain can withstand and how it can rewire itself to accomplish the same things it was able to do before. Dad has the battle of the damage of the aneurysm and the damage from the aspergillus. He has the will to get through it obviously!! I left the book in the room if anyone wants to read it. It isn't revolved around strokes, but brain injury. I sure wish I could have read that back when my great grandma Shelton had brain trauma.

Well, I am off to bed. Debbie is going to see him tomorrow, then Martha on Tuesday and Wednesday. I think Scott is going up this weekend. I have 3 senior shoots, so I won't be able to see him for a few weeks. I will try and keep up on what is going on and keep you all informed. Thank you all for caring about my dad!!!!

Thursday, August 27, 2009

Update From Martha

(Martha sent this to us via email last night. I think she is back home now and his sister Debbie is there. Coleman and I are going up Saturday morning. We are bringing the camper and camping at a place in Oelwein. 15 bucks for an electric site is SO much better then 70 for a hotel. Plus, we really haven't gotten to camp this year.)

He did not wake up very much on Tuesday. Would squeeze my hand, but that is about all. He was more alert today and they set him up in a chair for a few hours. He also had Heather as his RT. She deflated the balloon on his cuff and I was able to hear his voice. She had to put some air back in, but they are going to work on him talking. She said by deflating the balloon it was forcing air up and causing a tickle in his throat and made him cough.

I met his doctor yesterday and had a long conversation. He is there the last Tuesday of each month, so I will definitely be there on those days. Had to go through the short version of his history. After the exam, we talked. He is going to taper him off the Keppra. I had told him he hadn't had a seizure and the last time he was on it, he was off of it within 6-8 weeks. He said for some people, Keppra might sedate them, so who knows maybe he will wake up more.

He is also going to taper him off the blood thinner. He has already been switched to Lovenox as the insurance would not cover the heparin and it isn't cheap. He said long term use of blood thinners can cause other problems.. Also discussed the bed sore. Wanted to know what was done on it previously. He had the wound nurse come and check it out, but he never told me anything, but I did hear him (the nurse) telling the nurses different orders.

Discussed CT scans - since the last 2 have shown a shrinkage of the spots in the brain, we aren't going to have more done unless there is a need for them. Your dad would have to be transported to a hospital and I don't see a need to have it done on a monthly basis. I also told him I didn't understand why they weren't checking the other places where they know the fungus was when he was getting the previous scans. He agreed. He will let me know if he thinks there is a need for them, otherwise we are done on scans.

When I getting ready to leave today, 2 aids came in and put the bed down to a 30 degree angle and I asked about the feeding tube. Said it wasn't necessary if they didn't go below that level. So, I stopped at the nurses station and requested that anytime the bed is lowered - no matter how much - I wanted the feedings to be stopped. There were 4 nurses there and the one who I think was in charge this afternoon agreed and said they would put the word out. Also had the doctor take the orders off for the latex allergy. Not sure how long that will last, but thought it was worth a try. The doctor is also going to change his insulin to Lantis. His blood sugars are up and down and nothing changes.

Liza - there is a brew and barbeque festival in Independence this weekend. Not sure what it means, but it sounds like a big event.

Scott = I ate at Luigie's last night and it is good. Kind of reminded me of Amadeo's - but more lit up. Had the 1/4 broasted chicken and it came with a trip to the salad bar and choice of potatoes (hash browns were good). The local phone book has the menu in it. Very reasonable on price.

Yesterday there was 1 horse and buggy in the lot and today there were 2.

Monday, August 24, 2009

Update from Scott

I drove up to Oelwein on Sunday morning to spend the day with dad.

The trip was pretty uneventful, as dad slept most of the time. He was awake more later on in the afternoon, but as it was a short visit for me I had to head back to Ankeny around 5:30pm.

The staff says that he's gradually (and slowly) improving. The keep dropping his oxygen levels and he's tolerating it fine. They're getting him up in the chair and helping him work towards building strength and stamina.

Hopefully the infections stay away and he can start weaning soon. I know he'll like being off the vent again.

Martha will be visiting on Tuesday and Liza will be going back up next weekend.

Friday, August 21, 2009

Oelwein


I took a day off work to go see dad. He was pretty tired in the morning. I would have to look pretty hard at him sometimes because they way he sleeps, you would almost think he isn't with us anymore if you didn't see him breathing. The right side of his face is a bit sunken in around his temple and he can't shut that eye the whole way. He gets really pasty white when he is sound asleep and half the time his mouth hangs open. I felt pretty defeated for awhile.

They got him up around 10 and put him in a big chair, where he continued to sleep. They had him there for about 2 hours. The occupational therapist came in and worked with him. She did a lot of upper body work and he was actually really trying to help her. His left hand gets pretty swollen since he can't use it so she showed me how to manipulate his hand to make the swelling go away. I can tell you that what she does works, because he was pretty swollen on Sunday when I was there and barely swollen at all yesterday. They don't work with him on weekends, so that is why he swelled up.

She hand him bring his right hand to his chin and scratch it, shrug his shoulders and do resistance therapy with his right hand. She thinks that he is already showing more signs of strength even though some of the things she is doing does hurt him, he is really trying to push through it.

I asked her if they could start getting him dressed since he hasn't had clothes on since February other than hospital gowns. We went through his closet and pulled out a couple T-shirts that she is going to send to the seamstress. She can cut them down the back and put Velcro on them so it will make his life and whomever is dressing him life much easier. I think that will make him feel better. I know it would me!

After this was all done and they got him back to bed, he was pretty awake after that. His TV is a flat screen and it is in the middle of the room not near his bed, so it doesn't swivel, which makes it hard for him to see. Plus, I don't think the sound is that great. Since he doesn't have In-line oxygen (coming out of the wall) its an actual tank machine that is pretty loud. So coupled with that, you need to turn the TV way up for him to hear it. I am a loud TV listener as it is, but the volume you have to have it on to accommodate him is pretty loud. I would mute it during commercials and he would raise his hand up and ask what happened to the remote. So, he was listening to what was on.

I asked if we could move his bed to the center of the room, so they are either going to do that, or have the maintenance man come move it over to his side of the room. Apparently it used to be by his bed, but they took it down to paint and then placed it in a stupid spot.

I can't believe how nice everyone is there. They all walk around like they love their jobs. That kind of quality of care in a nursing home is SO hard to find. One of the gals who wasn't even assigned to dad saw I had a blanket on and asked if I wanted another one. Who does that?? They do, and its awesome!

They had nursing home Olympics while I was there, I shit you not. It was AWESOME!! They brought in residents from two other nursing homes and they did physical games against one another in their little court yard. It started to rain so they took it in the dining hall. It was pretty cute. I am so happy the involve their residents with things to do. I can tell you that they all look happy to be there.

Dad didn't problems coughing yesterday at all compared to Sunday. They used a cough assist on him a few times because he asked for it, but not a whole lot came up. THAT'S GOOD!! They have also turned down the amount of oxygen that he was on before to prepare him to wean. He is tolerating it very well.

One of the ventilator patients was talking and I heard her. So I asked the respiratory therapist why she could talk and dad can't. I guess when that happens, there is a balloon that they put air in that fills up his trachea. When that balloon is filled, no air, or secretions can escape around it. Air from the ventilator will then come up through your mouth, which some patients don't like so they will fill the balloon back up. Dad's reason for having that filled is because of his infections and all the secretions he has. It's a protective measure so he doesn't aspirate or choke. So, the goal for dad is to get rid of the infections, so there are no secretions and he can get the air out and talk!!! It will be a slow process, but hopefully we can get there. That is MY goal for him. I think they can do it!

I went to K-Mart there. Wow. Small town K-Marts are soooo not impressive. I gave dad 15 minutes to think of anything he wanted from there and all he came up with was shampoo. So, I grabbed him some Pert Plus and hopefully they will use it. I also bought him an air freshener deal to get the nursing home smell out of his room. Its a fake Glade candle that flickers. It adds a nice ambiance to his room. At first I thought he didn't like the smell, but he insisted he did.

I think if anyone wants to go visit him, that would be nice. The best time to go is probably in the afternoon. That's when he seems to be most awake. It is really hard for him to talk, so if you just talk to him he will nod to you and he does listen even when his eyes are shut.

I am sorry that I am slowing down on my blogs. Its hard to think of stuff to write when I am not there, and we aren't dealing with his health during a critical time when something is always changing. It really surprises me to hear about all the people who read this and still follow his care. I know that he appreciates all the support and we DEFINITELY appreciate it. I can't believe this blog has had over 12000 hits and averages 60 hits a day. THANK YOU ALL SO MUCH!!!!


Monday, August 17, 2009

Hello There!

Dad's nursing home has horse and buggy parking. In case any of you are concerned that there isn't any. :)

I drove up yesterday to see him. Scott was there all weekend. Scott had some concerns with dad's level of care and I saw some things that also worried me too. I am going to go up there Wednesday night and stay through Thursday so I can see how they operate during the week. I always think that care is substandard during the weekends.

Dad seems to be out of spirits. He really didn't want us to leave. I always feel awful when he does that. I wish I could stay with him, but I have to have a job so I can afford to go see him. I am going to leave after work on Wednesday and am going to spend the night with him and stay with him all day Thursday to see how they operate during the week. I also want to see how active physical therapy is with him.

I do think that everyone there is very nice, I have just seen some forgetfulness from the staff that bothers me, and some things that the aids are doing that I don't necessarily think are in their scope of practice. I could very well be wrong though. Its been awhile since I have done any of that stuff, but I am thinking I am right.

Tuesday, August 11, 2009

Much Better

He is doing much better today. Martha wasn't sure if he had had any rehab when I talked to her, but there were some rehab stuff in his room. He seemed to be feeling a bit better. They bathed him and shaved him, but left his mustache. She says he looks really good. I don't recall seeing him without a beard since the Reagan Administration.

The address there if anyone would like to write him is:

Grandview Nursing and Rehab
800 5th St
Oelwein, IA 50662

It isn't a huge facility. Just put AttN: James Shoning on it and it will get there. I can't recall the room number.

Monday, August 10, 2009

ARGH

This past weekend SUCKED! I swear I think a black cloud hangs over us for some reason and I can't figure out why. Maybe I need to go to church or something.

Someone STOLE my car early Saturday morning. Came down MY driveway, ransacked Coleman's Commander and got into my vehicle and stole it. We were both sound asleep. The dog didn't bark, but why would she? It was the sound of my car leaving. She doesn't bark when I leave. I fell asleep on the couch, she was in with Coleman in the bedroom. Our neighbor heard people talking and a car, but she thought it was us.

I wasn't able to go see dad, obviously, with no car. Plus I had to stay around in case the police needed me. Jordan and I drove up Sunday morning to see dad. He was pretty sick. He got there on Thursday and Friday they managed to lay him flat, not turn off his feeding tube and he aspirated his tube feeding. Lots of it. they put him on antibiotics immediately, because that is an instant cause for pneumonia he doesn't need. The respiratory therapist was still pulling food out while we were there. I voiced my displeasure over this and she said that the CNA's who did it, had been talked to and they were going to have a big meeting about it today. When Martha called up there today to check on him, they said he was doing better.

I have to say that other than that happening, my first impression of the facility is actually very good. It doesn't smell like a nursing home. The residents all seem very happy to be there and the staff is very polite and nice. It doesn't take long for them to respond once you push the call light. The respiratory therapists seem very knowledgeable. They do not have to have doctor orders to attempt to wean, they can pretty much do whatever it takes as long as dad can tolerate it. They plan on doing physical therapy with him 5 days a week.

His room is somewhat large, he is by himself. There is no internet there, but we can have the cable company come hook it up. They don't have central air, but the window unit in the room isn't noisy and keeps the room at a good temperature. He also has big windows in his room he can open. I opened them for him and he got some good breezes from the storms that rolled through. He liked that.

His oxygen supply is not in the wall, its a portable tank machine that is very loud, that is kind of annoying. Once I was there long enough, it didn't annoy me as much. I read some past patient histories while I was there. They had one gal there who had a brain tumor, went into a coma for 3 years, and started coming out of it. They weaned her off the vent and now she can move everything other than her legs and can eat and take care of herself. That's pretty impressive to wean someone off a vent who had been on one for 3 years and in a coma!!

They have a photo album up front that I peeked at. It was pretty cute, this being a small farm town. They had pictures of a dairy cow out front of the home someone brought and the let the residents milk it! They also had pictures of old show cars, nice tractors and race cars that people bring up for them to look at. Hopefully some day dad can participate in milking the facility cow! haha

Dads cousin Diane from Oklahoma City came up and visited him for a bit on Sunday. He was really too sick to try and talk. It took me 45 minutes to figure out dad wanted his robe brought to him. I am going to go back up on Sunday to see him. Its only 2 hours and 15 minutes from my house. I might even try a different way to see if I can cut some time off.

Hopefully in about a month, he will be up for company that he can TALK to, if we can get his talking valve in.

Thursday, August 6, 2009

TODAY IS THE DAY!!!

Sorry I haven't written on here in such a long time. There is a reason for it. We found out a couple weeks ago that this place in Oelwein has accepted him as long as he was infection free at transport. Everytime I get excited about something, I blog about it and then it falls through. So, I have been keeping my mouth shut.

As I type this, he is currently being transported to Oelwein with 3 lady paramedics. WE MADE IT!!!

He has been very alert and quite social lately. They did a chest xray and cultures yesterday because his temperature went BELOW normal. That freaked Martha out a bit, but she realized that they would be outta there in the morning before the cultures could grow.

This place seems pretty awesome. They have hooked one of there paralyzed patients up to have internet access...with her EYEBALLS!.

I cant wait to get up there!!

Monday, August 3, 2009

This past weekend

Update from Scott:

Kelly and I went up to visit dad on Friday night. We got there around 7pm, and he was very tired and sleeping pretty soundly. He did wake up, but seemed like he wasn't up for having company. So we went back to the hotel and rested up from the drive.

Saturday was much better. Dad was awake and alert, and was much more interactive. You can always tell when he feels better because he wants to sit up in bed and wants to wear his glasses. He attempted to participate in many of the conversations going on in the room, and seemed much more engaged with everything going on.

I offered to rent a movie for him to watch, so I ran over to Jewel/Osco and got a movie from Redbox. After the movie had been on for an hour or so, dad seemed to be losing interest, so I asked him if he was having trouble focusing on the movie and he shook his head. I asked him if the movie sucked, and he nodded in agreement.

So apparently Knowing isn't much of a movie, if it can't keep the interest of someone who has been bedridden for almost a year.

Dad was also awake and alert through most of Sunday - so it was a pretty good visit.

His sister Deb should be getting there sometime Monday afternoon, and Martha is heading back up there on Wednesday for the transfer.

Dad has been admitted to a skilled nursing/rehab center in Oelwein, Iowa - and will be moved there this Thursday, if all goes well this week.

How we ended up in Oelwein is quite the frustrating saga.

For several months, we have been looking for places that can not only handle dad's complex case, but also has open beds and is a reasonable distance away. Harmony House in Waterloo was the only place in Iowa that we could find, and we've been talking to them for months about getting dad there, in addition to a few other places in Illinois.

HH continually had no beds available, and apparently nobody there thought it would be valuable to tell us that they have a sister facility 20 minutes away that offers all of the same services and therapies, and has beds available.

Really? Seriously? We might have been able to move him months ago had we known that little nugget of info. Thanks, Harmony House. We didn't even know the place in Oelwein existed until 2-3 weeks ago, and we learned it from somewhere else.

Anyway, now we have a place to go, and if dad doesn't get anymore new infections in the next few days, we'll have him back in Iowa for the first time since early January.

We'll post another update later in the week, closer to the transfer day.
 
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