September 30

Dad really seems to be getting down in the dumps. He voiced to Martha yesterday that he was depressed and really quite frankly tired of fighting. He thought he would be better than he is by now. I know that when I have been there, I have set goals for him with the respiratory staff and I am unsure if they are following through. 3 weeks ago, we set a goal to deflate his cuff every day and to try to get him to use his vocal cords so he was able to tell Scott happy birthday tomorrow. I don't think they have done that. They haven't done that during the week when Martha has been there, and they haven't done it over the weekends when Scott was there. Maybe we need to have a meeting with the staff to set some goals that will be followed through on.

I have also noticed that when I have been there, they have ventilator patients out in the common areas to watch tv or watch the activities that are going on. They haven't brought dad out for any of this. I tend to think that maybe its because if his Aspergillus, but I am unsure of that. I think it would help him get out and watch something other than the TV or the back of his eyelids.

The doctor was in yesterday and removed the trach that RML had put in and I guess it came out like butter. Made the RT staff look stupid. Didn't hurt him at all and he rested comfortably throughout the day.

I really hope he isn't giving up. We have come to far for him to give up now. Him making it home would be an absolute miracle, but getting him off the vent and giving him a better quality of life, I'm sure we can strive for...and to get him back to Des Moines.

Sept. 23rd

Dad has been very stable the past week or so. He has been sleeping a lot, but they have not been suctioning anything out of his lungs. I don't know if they have been working on him speaking or not. Martha is there now and he is sleeping. He told her he wasn't doing very good, but she thinks he looks fine.

He still lights up when he gets cards and letters from people and anyone is welcome to take a drive to see him if they want to.

Scott was there Sunday for a bit and he wanted to watch a movie, but he couldn't stay awake for it all. I think he gets bored really easily.

We have a family wedding this weekend, so no one is going to be there. Martha is leaving in the morning tomorrow so I will post up any information as it changes.

Hi Everyone!!

I am so sorry that no one has written. Scott was up there last weekend. I reminded him a few times to write, but he was pretty busy at work and then must have forgotten by the time he got home with a 3 year old and all. Martha was up there during the week, but I hadn't really talked to her that much other than the same "no changes really conversation." Debbie was there and his friend Bob Beal drove up from Missouri to see him. (Oh Debbie, you will be happy to know that the nurse told Bob that he just missed dad's daughter...which was you.)

Coleman and I went up there today. He was asleep most of the day, but when he woke up, I had the RT deflate his cuff to see if we could get him to talk. The good thing is, they decided to turn his feeding tube off for two hours a day now, and 15 minutes before any sort of turn or re-adjustment. Since they have done that, every day following they are suctioning less and less stuff up. YEAH!!!!

Anyway, back to the cuff...Once it was deflated, he coughed pretty good for about 5 minutes and then he was fine. His oxygen sats stayed up and his heart rate was good. Then we tried to get him to talk. He really tried, but we just aren't getting his voice to come out yet. He is whispering and actually passing air, so its easier to understand him. We had to keep reminding him to whisper with air instead of just moving his lips. He doesn't quite have the strength yet to get enough push behind his cords to make noise.

Words we worked on though were, Jordan, shut up, beer, rare-bit burger, hi, and ribs. I tried to get him to inhale real deep and then try to push out HA! We tried Ma too. He even tried to hum. This lasted for about an hour and then he really couldn't tolerate it anymore, so we stopped. The RT says she will put in his chart for them to try that every day at least once, if not twice since seeing how well he actually did.

I caught a glimpse of his heel sore. It is all necrotic underneath now and we really can't figure out what the hell is causing it. I know it doesn't take a lot, but nothing has changed. It is so frustrating. It is also frustrating that no place in Oelwein serves pepperoni pizza, but that's another story. :)

He actually requested the TV off and no radio and wanted me to read to him. I left the book there that I was reading about the neuroanatomist who suffered a stroke, so I started reading it. I got through 3 chapters before he fell asleep. he really liked it. So, the next person who goes up and wants to read to him, start at Chapter 4.

He was happy that Bob drove up to see him. He shook his head yes when I asked him if it was nice to see someone else other than our boring faces. I really think he just likes knowing that someone is there with him, even if he is sleeping.

He seems pleased that I am carrying on his photography. He really perks up when I talk about it. I had a friend commend me on some of the seniors that I have shot recently and as usual, I am hard on myself and don't take compliments well. He sent me a link to this video on youtube that was awesome and actually made me tear up. If anyone feels like watching it, here is the link:

http://www.youtube.com/watch?v=KZYlQ4Wv8lE

About 7 minutes into it, you will see what really hit me like a ton of bricks.

He still has the same trach tube in his throat as he had in Chicago. They RT has mentioned to me a few times that they don't use that kind there and she was confused why they ever even used it because it is more of an ICU trach. I thought they had removed it already, hell I can't tell the difference, but I was told today that they have tried 3 times to get it out and they can't. The kind that is in there, after awhile, the tissue in the throat starts to kind of adhere to the cuff. The RT said today that basically, you have to rip it out and it can cause pretty bad bleeding, so the doctor is going to have to do it when he comes in the last Tuesday of the month. That sounds pretty disturbing....I might have to go up there that day.

The next few weekends are pretty booked. Scotts wife's birthday, I have some shoots, our cousins wedding and then my brothers birthday. If anyone wants to take a little road trip to see him any of the next 3 weekends, that would be fantastic!!! If you do, shoot me a message and I can tell you how to get there and all that good stuff. :)

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!!!!

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.

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.

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!!!!