December 7th, 2009. A Date Which Will Live In Infamy.

Today is one month since the passing of my father. I have wanted to write on this blog, but it's been hard for me to try and write anything without breaking down. I have thought of him a lot today, mostly because of his weird obsessions with war stories. He would even tell you that he was in a war. It lasted a week. There is even a book on it, he owned it and I tried reading it. I was bored to death so I quit. I might read it now, just to say I read it. He was in Morocco and was part of the communications to this ship and a couple fighter planes. I wasn't much paying attention. I don't think "war hero" and "Jim Shoning" are mentioned anywhere in that book.

I went to Hawaii in 1999 courtesy of a small cash advance from my father, which I ACTUALLY paid back thank you. I went with a dumb boy to go see my best friend who was stationed at Schofield which is the Army base on North Shore. It was awesome. I discovered lots of things on that trip.

1. The locals hate tourists
2. Amy's toddler thought garbage trucks were called "Trash Candies."
3. A pitcher of Bud Light cost 12.50
4. Staying in the married housing on the base was domestic abuse central. All I heard were couples screaming and kids bawling.
5. Pineapples grow in the ground.
6. When seeing the ocean for the first time from a distance, its hard to differentiate it from the horizon.
7. I was shocked how many Japanese people were there.
8. The bars stay open until 4 AM. I never thought in a million years I could drink that long. I was wrong.
9. Throwing up off a hotel balcony 25 floors up is fun.
10. It only takes one bullet to kill me and Amy.
11. Pearl Harbor is the COOLEST thing I have EVER seen in my LIFE!!!
12. Birds are everywhere and will walk on you to get fed.
13. When paged by a Japenese girl, my name was pronounced Ricea Roni.
14. The best place to buy souvenirs for people is at KMART!
15. Jack in the Box is the best fast food that has ever touched my mouth.
16. Bars hire elderly people to assist you in the bathrooms for tips.
17. Baby oil and Hawaiian sun is a bad idea.
18. The airport has no roof.
19. The weather changes in .5 seconds.
20. Honolulu is actually pretty dirty.

When I think of Hawaii, I instantly think of Pearl Harbor and how awesome it is. I wish everyone could go there and check it out. It is so moving and very breath taking. It really sobered me up to the reality of war having never experienced it myself. I can still, 10 years later smell the oil that bubbles up from the Arizona. Standing on the USS Missouri, looking over the edge of the ship and seeing the huge dent from a Kamikaze plane and then closing my eyes and seeing Cher in her nasty, half naked outfit dancing and singing to, "If I Could Turn Back Time." *barf* Way to put your stamp on historic US History Cher.

I bought some nick knack things for dad and I brought home a replica of the Honolulu newspaper with the headline, "JAPS BOMB PEARL HARBOR!" He loved it. He told me he took it to work and put his feet up on the desk and proceeded to lean back in the chair and read it. Mary walked in and saw it and was shocked and yelled, "What!! Not again!!!" Now, she would have to verify that story, I am not sure if it was true or not. You all know how gullible he made everyone.

Miss you dad!

:-)

James Shelton Shoning March 25th, 1947-November 7th, 2009

I somehow thought this blog would end up with my happy middle finger sticking up at everyone who doubted dad's recovery. A big "HAH, I TOLD YOU SO!!

Sadly it isn't.

Dad was sent back to Oelwein this past Tuesday. He was doing fabulous. He even told the nurses how much better he was feeling. On Friday around 6, I talked to Martha and she had just got an update that he was very alert and doing fine.At 10:30 I got a hysterical phone call that dad was in cardiac arrest and they were taking him to the hospital. I immediately went to Scotts. We pulled out of the driveway and I called the hospital and spoke to the doctor who worked on him. She said that the ambulance was able to revive him, but he was very sick, his white blood cell count was very high and to get our butts up there. She was having him flown to Covenant in Waterloo.

I was shocked. I know nothing is wrong with his heart, so what could it have been? I thought maybe he was septic from something, but how could he have gotten that sick in such a short amount of time?

Once we got to the hospital, they had him in CT scan, so we had to wait. After watching what seemed to be 3 episodes of 25,000 Dollar Pyramid in the waiting room, the doctor finally came up and took us in "The Room."

He told us how sick he was and that it looked like that he had a stroke. He was unstable but they were going to continue to do more tests. We asked to see him. He took us back and the second I saw him, I knew there was nothing left to fight for. One of his pupils was blown and his eyes were shifted up to the right. No reaction to light at all. I just looked at Martha and shook my head no.

We decided to stop all life saving measures. At 4 AM, we took him off of life support in the ICU and gave him morphine and ativan for comfort. We all stayed by his side, telling him stories, listening to music and holding his hand. Jordan and I had chairs pulled up to either side of him and had our heads on his legs. I had fallen asleep listening to the rhythm of his quite breaths. Jordan yelled my name and I jolted awake to see him breathing very slowly. We screamed at everyone to get back in the room and we were all with him as he took his last final breaths, talking him through it.

My dad died at 10 PM.

Now the hole that was in my heart that was created when my grandma died has become the size of what feels like my entire body. Dad is the glue that holds us all together, what always held me together. He was just like my grandma, had the ability to hold every one's attention and just had a sparkling, radiant personality that just drew people in. Always the center of attention.

The center of my life that I(we) worked so hard to save has just been ripped from me. He was right, he told me that he would die because of his brain and I told him he was wrong, and he would die from something stupid. I honestly thought that. It doesn't matter though, because I secretly hoped he would never die.

I see how many lives my dad has affected. When I started this blog it was because so many people kept asking me how he was and I would forget who I told what to. I have had people as far back as college, even the navy write to me about him. I have had people tell me that their co-workers who don't even know dad read my blog because they are interested in his life through his friends.

I am so angry that he had to be so far away through all of this! It isn't fair that he couldn't be surrounded by all the people who read this every day. No one should have to go what he went through, it was absolute hell. I can't believe he held on so long. Even after we took the vent off yesterday, we thought it would be a matter of a few hours. It was 18.

My goal was to get him home. I guess if you look at it in the religious sense, he is now. If we are talking location, he will be in Carlisle soon. I wanted him home. Sitting in front of the TV watching the L Word, or Battle Star Gallactica. I want him at the bar, throwing his empty beer bottle across the table when he was done to let the waitress know he needed another one. I want to hear him sing the stupid Newfie songs and see him walk around with his shirt off slapping his chest and pretending to punch every one in the face. I want to see him taking pictures of car accidents and high school seniors. I want to see him make everyone around him turn into a gullible idiot, because he had the ability to do so. I want to hear his complete inappropriate sense of humor at the wrong time. I even want to hear him yell at me and tell me how stupid I am. I want him to meet the children that I have some day and be the goofy grandpa. Hear is dumb "hen weigh" jokes and how he would yell "SNAKES!" when he would hit those rough road patches before a stop sign or tell Jordan to look in the air at the dead bird.

No one will ever replace the man that was my father. He was truly a one of a kind man. My life will never be the same now and I think I can even go as far as saying that Carlisle wont be the same now. I hope to give him the best celebration of his life and the best send off he deserves. His life was taken from him way too young, but now his suffering is over and all of ours has just begun. I love you Big Jim. I hope you and Skippy are at peace in Heaven now. (Or Octopus Garden) I love you, we all love you......

I HATE BRAIN ANEURSYMS
The End

Oelwein

Dad is back in Oelwein, much to the chagrin of others who may think he belongs elsewhere. But I am keeping my mouth shut.

Let's just hope he thrives there now.

Sunday - update from Scott

I got here around noon - dad was awake and alert and had been weaning since about 8 or 9 am.

It took me a minute to find him because nobody told me they moved him to a different room for some reason. This new room is a bit smaller, but he has a better view of the TV. Not sure why or when they moved him.

It's now almost 3pm and his O2 sat has been around 98-99 and even hit 100 a few times. Can't do much better than that.

The nurse says his bedsore is looking really good with whatever treatment they've been doing for it.

This is probably the most awake and alert I've seen him in quite a while, so I've been talking to him quite a bit, giving him as many updates as I can think of. I showed him some pictures of Zane and Alison's baby on my netbook. He seemed to enjoy that.

The nurse gave me a cup of ice chips and I pretty much fed him the whole cup until it was gone. He really liked it and wants so more. He normally complains that his mouth is dry and all I've been able to do for him in the past is a little tap water on a sponge/swab. This has to be a lot better.

I'll post another update later.

Surgery

Dad's surgery went well. They didn't find an abscess and they determined the radiologist read the film wrong. It was a tube that they had inserted that the radiologist saw. Idiot. Anyway, he pulled through nicely.

He is currently weaning. Martha said he has been wide awake more than a few times since his surgery. He is sleeping now. Im sure they have him on even more pain meds, which is actually exciting if he is that doped up and able to breath on his own.

I got a call back from Tom Harkin's office. I will give that lady a call back later and see what she has to say.

Surgery

Dad is scheduled for his colostomy tomorrow. The plastic surgeon came and looked at the abscess and it is more in the peri-rectal area, so he didnt want to touch it and referred it back to the surgeon to see if he wanted to drain it. I am sure he has it because his last name is Shoning and not from the bed sore. :-)

They say that his wound looks a ton better now than it did when he came in. All pink, fresh tissue.

They are giving him a new diuretic that I guess is given to people who are specifically on ventilators. Makes them a bit more successful at weaning. Must have some sort of lung properties in it. They are weaning him 6 hours on, then a few hours off now. It helps him build stamina.

He is also getting physical therapy daily, but he is so puffy with fluid now, its hard to do it. He is back up to almost 300 pounds again. That is a lot of fluid.

That's all I have for now.

Poppa

Coleman and I went to be with him yesterday. He really seems to have a sense of peace about him now, like he feels okay being where he is.

He was pretty sleepy most of the day. He is on a really strong pain patch and is getting morphine also to suppplement the remaining pain. He sill complains that his shoulder hurts. He really wanted a lot of water yesterday. The nurse allowed me to give him some ice chips and he loved it.

Its a lot harder trying to figure out what he is saying now, because he is so high on pain meds. When he was awake, he wanted to watch CNN and when we left he didnt throw a fit. He knows he is having surgery for the colostomy this week and he was fine with it.

The staff there are really nice. I like them all a lot. Scott is going up today to spend a little bit of time with him at dads request. I took of video of him saying hi. Its on Colemans phone now. Ill post it up later.

Hell Yes!!!

Dad weaned yesterday for 12 hours. He could have gone longer, but they put him back on so he wouldnt tire out and would be able to go again today. Which he is, and doing well.

They got the results of the CT scan of his pelvis back. He has a HUGE abcess in his bed sore. They are going to have a plastic surgeon or a general surgeon take a peek at it. They are seriously considering giving him a temporary colostomy bag because they just can't keep that wound clean unless they do, and we really need it to heal. Wounds like that can be fatal if they aren't treated correctly. That is how Christopher Reeve died and I am sure he had the best of the best medical care.

I am SO freaking happy he is where he is. These people are a God send and he really needs it.

Thanks everyone!!!

Past Weekend

From what Scott said, dad was fairly alert most of the weekend. They were successful at weaning him a few hours at a time, twice per day. Thats all I got out of Scott.

Martha called today. He had a different pulmonary doc take a look at him. He has a bit of fluid surrounding his left lung, and it appears that the left lung has also narrowed at the left brochus. So, they are going to do a bronchoscopy today to figure out why. This may be the reason why he hasn't weaned. The food flooding into his lungs for the past few months didn't help either.

I found out that he did receive some blood product last week and they are also going to put him on lasix, as he is getting fluid accumulation again. They are changing his pain meds to a phentynel patch, so that should help with some of the pain he has.

I am going this weekend. I hope to stay with him both days.

Dad is WEANING!!!

He has been in Oelwein for what, 3 months? And they never attempted to wean. He has been in the hospital for 5 days, and they are weaning him. They are shooting for 2 hours today, and he is just about there. His lungs look sooo much better now that they moved the tube.

The lady doc that was there when he was admitted told the pulmonologist that she wanted him weaned so he can come back to Des Moines. SHE IS AWESOME!!!

Finally a doctor who is looking at him as a 62 year old human being who has had some shit circumstances and not as a medical chart full of unsolvable issues. I am so happy!!

Gary Fong is the Coolest!!

For those of you who don't know who Gary Fong is, he is a very famous retired wedding photographer, real estate investor and inventor. He is kind of like the Mike Tyson of photography...without the ear biting and raping. Anyway, dad always followed him and actually found himself joining Facebook because of him. I am also a fan of Gary so I sent him a little message this morning asking him if he would write a "get well" message on dad's page. I never thought he would respond back, and he did!! In like 20 minutes!! What an awesome dude!!!

This is what he wrote:

Gary Fong ✮
Hey Jim, I got such a nice email from your daughter explaining your situation. I've been in the ICU before there are so many electronics surrounding you. I used to watch all the monitors like a dashboard connected to my body. Anyway this much I know you have a nice daughter! Looks on your status that things are looking up, - may your 25th be filled with hope on your anniversary and may your recovery be swift! One thing going through rough times has taught me is bigtime patience :) get well soon! Gary Fong

How cool is that! What a neat dude.

Anyway, dad has a strep and a staff infection. He is still sleepy today but seems to be feeling a bit better. The rehab doctor is going to come in and see him next week. the ICU doc doesn't think that splinting his shoulder will help, but I guess that will be determined next week.

Debbie is coming today and staying through tomorrow. Then Scott will be there. Ill keep everyone posted on any news I get.

Surgery

Dad has slept most of the day. They can't really tell how well the new feeding tube has been working since they haven't run it yet. They took him to surgery today to remove the central line. Took about 30 minutes and apparently was chock full of infection.

They changed his urinary catheter out last night. It was clogged. I bet that felt nice. No wonder he hasn't had much urine output. I guess its better than having kidney failure.

Martha is leaving tomorrow. Scott is going up this weekend for the UNI game and is staying both nights.

Ill write more when I know more.

Happy Anniversary!!

Today is Martha and dad's 25th year of wedded bliss. I am sure spending it in ICU is AWESOME!!

Dad had surgery today to move the feeding tube. He still had food in his stomach and they had shut the feeding off 8 hours prior to the surgery today, so that kind of tells me that his stomach isnt working very well. Hopefully now that his food can be digested properly. No wonder he has no energy if he really isn't getting any food through him.

His blood count is low and so I imagine that they are going to give him blood. He also has an infection that they think is stemming from the central line he has. They put a new PICC line in yesterday and he is going to surgery AGAIN tomorrow to get the central line removed. They have to get the medical records from RML to see what kind of central line they used. I guess there is quite the variety of them and some of them take special tools to get out.

I really think we are on to something here. He is really sleepy today from surgery, and I am sure he will sleep all day tomorrow too from tomorrows surgery. I will update more as I find out.

ICU

I went to see dad yesterday and the trip ended as an ICU trip. He was very lethargic upon me getting there, which really isn't anything new. I tried to show him some pictures I had done lately and he kept falling asleep. I thought that was normal because usually he is tired in the morning and wakes up in the afternoon. So, Coleman and I just sat next to him waiting for him to wake up. He was in his chair.

At about 3 he motioned that he had to go to the bathroom, so I called the nurse in and thought that they should just clean him up and put him back to bed. He had been in chair since 1030. We left the room and when they were done we went back in and he kept saying that he hurt and it was in his chest. I asked him if it was more of a muscle pain hurt and he said more of a heart hurt. He rated it on a 3. Now, he has had a ton of shoulder pain from it subluxating out of the joint and Mr Aspirin only, is now at 10 mg of vicodin with no relief. He said that his shoulder did hurt, but that wasn't what was making him sick. So, I asked him what he wanted to do and he mouthed that they couldnt help him there and that he wanted to go to the hospital.

In the two years since he has been sick, he has NEVER volunteered to go to the hospital. The LPN and respiratory therapist were in there and they both said that for the past few days he has been in a lot of pain and seemed very sick. They had mentioned it to the charge nurse and she didn't do anything about it. So, they told me that they thought he needed to go in and that I should go to talk to her.

I walked out and simply said, "Hey, my dad really is in a lot of pain and is complaining of chest pain. In all the time he has been sick, he has never asked to go to the hospital, so I think this is worth investigating."

So, she came in and he told her he hurt and wanted to go to the hospital and that he generally felt awful. She took his vitals and they were all fine. So, she said she would call the doctor. She left and then came back in and said that the doctor said no because he didnt have a temperature.

I was like, "What does a temperature have to do with it!!" So, she said I could talk to him about it, so of course I said, "Lets go!"

So, we go call him and she tells him I want to talk to him. So I get on the phone and this not word for word, but you can get the point: "Hi, this is Liza, Im Jims daughter how are you?"

"I am fine, it is nice to meet you!" he said.

"Yes it is. Say, I have been with my dad all day and he is pretty lethargic and says he doesnt feel good, has some chest pain, so I think we need to go to the doctor to get checked out." He says, "Well, he doesn't have a temperature."

.......I said, "So, when does a temperature determine whether or not he needs to go to the hospital or not? I thought chest pain was a good indicator?"

He said, "I dont think he has anything that we can't address at the nursing facility."

"Really? I asked. So, what if he needs a chest Xray??"

"We can do that here, but not until tomorrow!"

So, I said, "Look, the last time I checked, my dad is 62 years old and of complete sound mind, so if he wants to go to the hospital, than he should be able to go to the hospital!"

So, he says, "Well GOD DAMNIT!! Why didnt the DAMN nurse TELL me that he wanted to go to the hospital!!???"

I said, "I thought she did and you told her no!! That is why I wanted to talk to you!"

He said, "Well, that is fine, but you need to realize that due to your dads disease process, he is NEVER going to get better, so you need question yourself how aggressively you want to treat him, because it isn't going to do any good!"

I said,"Oh really?? Than why the hell are we here?? We are here for him to wean from the ventilator and if that is not the case, then we can pack him up and take him right back to Des Moines if you think this is a waste of time!!!"

He said, "Well, from his disease process, I would say he isn't going to get better and you need to keep that in the back of your head."

I said, "What disease process are you talking about??"

He yells, "HIS AML!!!!" I said, "What?? He is a post brain aneurysm with invasive Aspergillus!!!" (AML is leukemia)

He goes, "What god damn patient are we talking about here???"

I said, 'Jim Shoning!!!'

He goes, "Ooohhhhhhh......"

So, the douche bag doesn't even have his patients straight!! So, he wanted to send dad up the street to the crap hospital that the staff told me to not let him go to and I refused. I made them take him to Covenant in Waterloo.

He has a pretty significant pneumonia in his left lower lobe. Which, is from aspirating food. They were pulling tons of it out. He was in the ER for about 40 minutes and they had shot him up to ICU. He had a temp of 101, but no temp according to the nursing home.

We met with his doc and she is a FABULOUS lady. We gave him his complete history and she said that a lot of times when patients are paralyzed, their intestines dont push the food through so it comes back up the esophagus. What they can do is put the tube in past his stomach, so it cant come back up. I truly think that is what has been holding him back all this time. After thinking about it also, we think that is why he was so sick at RML all the time. It was the food coming back into his lungs, which we thought was infection from the Aspergillus. Feeding tube food looks a lot like mucous secretions.

The doctor is having him meet with a gastroenterologist, a rehab doctor and a pulmonologist to get a handle on all of this. I think for once we are actually in great hands.

I just talked to Martha too and he is set up for surgery tomorrow for replacement of the tube. Not a big deal. The pulmonologist also poked his head in and asked Martha some questions and assessed dad. She seems really happy with the doctors there.

Cheer Up Time

Now that dad has some new meds on board, I was talking to a friend of our families yesterday trying to think of some things that might cheer him up. His room is pretty dull and I thought that if anyone wanted to have their kids or grand kids, draw him a picture or a get well note, we can hang it on the wall for him. If any of you want to draw out some words of encouragement, that would be awesome. We can have a get well wall for him. That way he can see how much he means to everyone and will want to keep fighting since its hard to go visit him. Maybe send him a letter of something funny he did or said and why it sticks in your head.

I don't know. Just a few ideas. You can mail them to him at:

Grandview Healthcare Center
800 5th St SE
Oelwein, IA 50662

Or, you can drop them off at his house in the mailbox, or my house or Scott's house. Drop me a line if you need an address.

Thanks everyone!!

Martha Update From Oct. 7th

Got a call from Grandview last night around 10 after I was already in bed and was a little freaked out when I saw the number. They called to tell me they had talked to the doctor and had gotten orders for Tramodal (???) for his pain as the Tylenol and ibuprofen weren’t cutting it. Got there before 8 and was told he slept good all night after having his new drug. Actually he slept all day – but when he was awake he had no pain. So, I guess that was good.

They still got him up today and he was in the chair for about 2 ½ hours. Yesterday it was closer to 4 ½ and even then he didn’t want to go back to bed because it hurt. Today, he didn’t argue at all. And he didn’t give the puppy dog look like he did yesterday when it was too soon to have more meds. It was the same look I use to get when I wouldn’t let him have more sweets. He had never done that to the staff before and they thought it was so cute.

He is also on Macrodantin for UTI and they said urine was Iooking better. Eyes are still gooping up, so he had multiple warm washcloths to his face as I was cleaning his eyes. Since he wasn’t in pain today, I also clipped the nails on the left hand. Today he said it was ok if I did the hand rub and manipulated the joints – yesterday it was a different story. I think the drug really helped as he seemed so relaxed his arms were even down.

I asked him if he has seen Demi the dog since she has been in and out of his room while I was there and he said he had. Asked if he liked seeing her and he said no.

Nothing else to report.

Sunday update - Zane visits grandpa

**Update from Scott**

On Sunday, Kelly and I took Zane up to Oelwein to see his grandpa.

It was Zane's longest road trip and we were hopeful that it would go well. Taking Zane to Chicago seemed like too long a trip for him, and now that Jim is back in Iowa we decided to give it a go.

Kelly's mom came with us to help in the event Zane decided he didn't like being there.

Dad liked seeing Zane. We sat him up in the bed as far as he could tolerate and he just watched Zane play for quite a while. Zane was a bit intimidated by all of the medical equipment and didn't want to get too close, but he did say goodbye to grandpa as we were leaving.

Dad was awake and alert but was having shoulder pain. The staff at the home isn't doing a very good job addressing his comfort needs. They need to be supporting his shoulders better by supporting his elbows. I think PT could also be helping out there, but I'm not sure if they are.

As Liza mentioned in her last post, dad is depressed and seems to be not in the same positive spirits he was in a few months ago.

Hopefully we'll have some improvements soon to give him encouragement to continue the fight towards recovery.

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!!!!

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.

Thank God dad didnt go to Harmony House!!!

http://www.desmoinesregister.com/article/20090812/NEWS10/908120348/1001/NEWS

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.

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.

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!!

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.

Tuesday

Martha is there now. Dad is very alert today. He still says he is tired that he doesn't feel good. He has been complaining of shoulder pain, so they x-rayed it today, but we don't know what the results are. It's mostly because the weight of his arms kind of pull everything out of the socket, so I am sure thats what it is. They need to tape his arms to his shoulders.

They have 2 units of blood waiting to give to him because his blood counts are still low. Im still not sure if they gave him that first unit yesterday.

The rep from Oelwein came to see him yesterday. Martha was told that if they send a rep to go see a patient, that usually means they are accepted, especially traveling that far. So, let's HOPE and PRAY that dad stays healthy enough to get the process rolling and we can get him in there, closer to home. I am really excited about this place!!!

Monday

Dad may have had a blood transfusion today. His blood count was a bit low and they called Martha to get permission to do one, but said they would call her and let her know if they decided to and they never did. But, apparently that isn't unusual.

I went to Carlisle tonight and stopped at the house. Grandview, the nursing/rehab facility in Oelwein sent a big information packet that I looked at. I have to say I am quite impressed. I think he will do very well there and it looks like a good fit. Let's hope we can get him in there! They are sending a representative to RML to see him sometime this week.

Dr. Lopes sent me a message on facebook and asked how dad was doing on Friday. I answered him back, but he hasn't replied. I didn't really ask him anything, so I guess I don't expect him to respond.

Dad has another gram negative bacteria again, so he still feels icky. Matha is heading up tomorrow so I HOPE we get some answers this week!

Ragbrai

I have been wanting to do Ragbrai for a really long time and had planned on going this year, but it really wasn't going to work out. So, I kind of gave up on the thought and on Monday I decided, screw it!! I am GOING!! I have a friend, Mike who was going and he had set up one of his friends to bring us home, so why not? Dad did it 30 years ago in 1979 so I wanted to ride for him!

I even wrote it on my legs!!!

We started in Indianola and ended up in Chariton. It was about a 46 mile trip. We left about 930 and arrived in Chariton at 5:38. I know because I looked at my odometer on my bike when we got into town. It was a ton of fun. I will definitely do it again next year. I am glad that I only went 1 day this year because now I know that I could never do a whole week. I like to be clean!!

We stopped in Ackworth, Sandyville, Milo, Lacona and then Chariton. The last 15 miles we nothing but hills. That SUCKED!

One of the guys we were with was a guy in his 60's. Came here by himself from New Mexico to ride the whole week. He realized as we were about to leave that he lost his wallet!! It made us all sick, he had all his money in it and his ID. We just found out that a vendor found it and he got it back! He had never been to Iowa before. I am sure he will come back now!! I am SHOCKED that he got that back!

Art is on the left, he is the one who lost his wallet. My friend Mike is in the black and his friend Bill. Mike and Bill work at the airport with the guy that drove the vehicle. They must have closed the Airport for the week since most of the TSA's were on Ragbrai. :)

Debbie is with dad this week. He still has a fever but was very alert today. They were watching Twilight Zone videos when I called. She said he was enjoying them. He still doesn't feel good and has pneumonia.

A nurse from the rehab facility in Oelwein is driving in to see dad and see if he can go to their facility. That seems to be where everyone wants him to go to. I hope its a great place! It is closer and would be a lot more convenient. I just want him to catch a break!!

Tuesday

Scott left Sunday and dad was pretty tired. Debbie is on her way there tomorrow-Friday. I guess he has a fever today of 101. They think he has pneumonia, so they started a new round of antibiotics although his white blood cell count had dropped. I find that wierd because usually you have a high white count when you are sick. Oh well. His calcium is out of wack also, so they gave him something for that. They also drew some blood cultures, so we will have to wait and see what those show.

He just can't get a break can he?

Sunday

Scott here.

I've been here since Friday evening. Dad was pretty good on Friday and all through yesterday. He was alert and awake most of the time, and interacted pretty well. He did complain that he didn't feel good, but seemed pretty good nonetheless.

They got him up in the chair for a couple hours on Saturday, which he seemed to enjoy.

An old friend, Dan Ritchie stopped by to see dad on Saturday afternoon, and was here for about a half hour. I hadn't seen Dan in probably close to 20 years, so it was nice to catch up.

Today hasn't been quite as good. Dad has looked really tired and has been sleeping quite a bit. He indicated that he felt worse than yesterday, so it looks like he'll still have good days and bad days.

He was up in the chair for a while, but wanted to go back to bed after an hour or so.

I'm leaving soon to head back to Des Moines, and aunt Debbie will be coming up on Tuesday.

Keep fighting, dad!

Thursday

Dads arms seem to be a bit better today, not as red and swollen. He still says he doesn't feel good. They took his wound vac away last week too when he had only had it for a few days. I asked Martha if she knew why and she is going to ask he nurse. She is coming home today and I think Scott is going there tomorrow.

I went to Dallas Center last night for the Carlisle girls softball victory that gained them entry into the state tournament in Fort Dodge. I think I got a lot of great shots!!

http://public.fotki.com/scottssister/carlisle-girls-soft/

Congratulations girls!!!

Quick Update

Dad has a blood clot in his right arm. They think its from the central line that put in last week, but they dont want to take it out because that is the only way they can draw blood from him or give him any medicine other than the feeding tube. So, they are going to increase his heparin dose from every 12 hours to every 8.

He still says he feels yucky and his eyes are infected and itchy again. They started him on something for that too.

Thats all I have for now!! Scott and I are going to take pictures at the girls softball game in Dallas Center Grimes tonight. I think Jordan is going too. Its their last game before state. Go Carlisle!!

Tuesday July 14th

Sorry for not updating. Dad was very sleepy this past weekend. We didn't interact a whole lot, I could tell by looking in his eyes how sick he felt. He said he felt awful too. I wanted him to get his rest. On Sunday we talked a bit. He became really alert when I told him Jordan was dating a 26 year old. He got all wide eyed and mouthed, "Who!!" (I was kidding, Jordan is not dating a 26 year old.)

He said he wants to go to rehab and I told him as soon as he got better we would get him there. Jordan did homework most of the weekend, I worked on some wedding photos from my first wedding that I did with Scott's help. I had never done one without dad. I think they came out pretty good! Here are a couple of them.

Just kidding on this one. She was in my yard last night having a grand ole time. I had to take a pic!

Martha should be getting there today. I will find out once she is there how he is doing.

I HATE the Food Industry!!

Why is it that whenever I order food, it gets screwed up. I think I speak perfectly good English. I just don't get it.

Last night Coleman and I went to Perkins. I ordered a breakfast that came with 2 biscuits that had chicken crisps in the middle and cheese and gravy on it. I even POINTED at the picture in the menu. When she brings it to me, it had sausage in it. Once I realized it, I called her back and she apologized and took my food away. Coleman sat and ate all of his by the time mine came back. So, the waitress said she felt bad and offered Coleman a free slice of pie because he had to SIT AND WATCH ME EAT!!! He already ATE his food!!! How about asking ME for a free slice of pie because she is an IDIOT and screwed up MY order!!

Then this morning, I went to Burger King in Altoona before Jordan and I hit the road. When we drove through, I asked for the Double Croissan'wich. Now, from the sausage incident last night, you can positively assume I don't like sausage. The sandwich comes with sausage and bacon on it. When I asked for it, I said, " I want the double croissan'wich meal, but instead of sausage on it, I want double bacon please." Forgive me if I am wrong, but I think that my request was pretty clear.

I pulled up to the window and paid, then asked the kid if he could throw my wrapper away that I had sitting in my car. He held his hands up and said, "We can't throw stuff away for people." How stupid is that! It isn't like I was handing him a hot steamy turd, or a bag of weed. Jesus, it was a wrapper Jordan had from her breakfast pizza at Casey's. Whatever. He then brings me my food. I pull away and after getting on the interstate I opened my sandwich. There was no sausage on it, but since they I guess, had to specially make it they didn't even heat it up. There was two very rigid, cold pieces of cheese on it and instead of double bacon, I got TWO small slices when I should have actually had four. Hence the word DOUBLE, should mean TWICE the normal amount of bacon, not TWO PIECES!!! I couldn't even eat it. I was tempted to go back in there and rub their stupid noses in my food. Does this happen to everyone or just me? Coleman thinks its just me.

Okay, enough of my bitching. We got to RML. Dad is tired, but alert. He wants to sleep. He has quite a bit of fluid in his suction canister and it doesn't appear that he is on any antibiotics. It looks like the central catheter has been placed in his chest. He is responding appropriately to conversation, but shook his head when I asked if he wanted to rest. He is pretty flushed too.

I will update more throughout the weekend.

Dad

Martha came back yesterday. He doesn't have a fever anymore, but he still claims to feel sick. Scott mentioned something about them wanting to discontinue his antibiotics because they weren't working and he seems to becoming resistant to them. Im not all sure about that. I think he was going to call RML today and see what he was on, and then ask his friend Jeff if he has any suggestions. He is a pharmicist and specializes in infectious disease.

Dad has thrush in his mouth and he does not like the mouthwash that they give him, so he has been shutting his mouth and shaking his head when they try and give it to him, so Martha had to yell at him to knock it off. He is also telling them no when they come in to turn him. The staff there allows it, but Martha told them not to.

They did give him a wound vac, so hopefully that will work!!

Debbie, dad's sister, found a skilled facility in Oelwein that weans. She checked into it and seems pretty excited about it. I emailed her and asked if they had an intensive rehab program, but I haven't heard back. I still like Ballard, I wish we could get him somewhere!!

I just heard that Dan Ritchie, one of dad's friends from Carlisle stopped by on his way through town on Sunday. That was very nice of him!! Thanks Dan!! I am sure dad enjoyed seeing someone else other than us!! I hope he was awake for you!

Jordan is going with me now tomorrow. I know dad will be happy to see her.

Illness

This illness has really been kicking dads a$$. He sleeps most of the time. He doesn't want his glasses on, he doesn't want to listen to his audiobooks and they have officially discontinued his weaning efforts until they can make him a bit better.

They tried putting the picc line back in, but were unsuccessful. A surgeon is going to put in a long term central venous catheter in tomorrow.

It doesn't look like he is going anywhere for awhile. :(

I am going there this weekend. I am excited to see him. :)

4th of July Weekend

Dad's sister Debbie was with dad this weekend. He still is running a temperature and was very sleepy most of the time. He perked up a bit when she told him about the new camera that she bought. She put me on speaker phone and I got to tell him how everyone on earth stopped me and asked me about him all weekend. I am sure that made his day. :)

I had my 15 year reunion this weekend. That was a BLAST!! It was so good to see a lot of us back together. It almost seemed like we picked back up from where we left off 15 years ago!! I would have to say that this reunion will be legendary!

Mary Bradish sent me some pictures of dad hard at work. He certainly is a tool. Where is the Maxim Magazine Mary? Is it hidden?

Spoke Too Soon

I figured I would jinx it.

Dad has what appears to be phlebitis in his arm. So, they are putting him on another round of antibiotics and will put a pic line back in him next week. So, he isnt going anywhere yet.

CRAP CRAP CRAP CRAP CRAP CRAP CRAP CRAP CRAP CRAP CRAP CRAP CRAP CRAP CRAP!!!!!!

FINALLY

Dad is moving either today or tomorrow to Ballard Place. HOORAY!! I am so excited he gets to go to REHAB!!! I can't wait for him to have the opportunity to be worked with and to be able to move around!!! Martha is with him and will stay with him until he is settled.

He sat in the chair for 2 hours today and was angry when they wanted to put him back down. He still thinks he can walk for some reason and was getting angry with Martha to get his cane.

His infections have cleared up. He just has an IV in his hand now to give him his meds and his feeding tube of coarse. The doctor said his head CT looks better than the last one. They had a neurologist check him out and he didn't think there was any reason as to why dad cant feel his legs, so there will be no further tests. Maybe Ballard can figure it out. Next weekend when I head up, I will be sure to take a ton of pictures of this place so you can all see it. It is AWESOME!!!

Yaay!!

Tuesday

Dad still isn't weaning today. Martha is going to call Valerie to see if she knows why. He also has different antibiotics hanging. It would sure be nice if they communicated a bit better. His thyroid is looking really good, but he will be on thyroid medicine the rest of his life.

Hopefully I will have more of an update later.

Monday

No one was with dad this weekend. Scott and I did a wedding together so we couldn't go. From what I know, he slept most the weekend and did not wean. I am not sure that they even tried. He still has a temperature. Martha got there today, he isn't weaning today either, but he is very alert. Martha brought some more books on CD and he is listening to them.

The wound nurse FINALLY has suggested a wound vac. I think that will help him tremendously. The nurse said his head CT was the same, but Martha is going to talk to the doctor about it. She hasn't heard anything about his legs yet and I emailed Dr. Lopes on Friday and he still has yet to respond.

In the next few weeks I am going to try and start planning a benefit for dad. Its getting to the point where this is something that we need to do. He has been in the hospital since Thanksgiving and in Chicago since February. The medical costs are tremendous along with the expense of us going there and being with him. I don't know the first thing about planning a benefit, so if anyone has any ideas, throw them at me, I would appreciate it!!!

Thursday

Dad is not weaning again. He can't tolerate it. He isn't really awake, this bug is really getting to him. They did another benchmark head CT today. I am sure it will be a few days to get those results back.

The doctor checked his lack of feeling in his legs and I guess it has extended to his left arm now. He is going to have a neurologist examine the head CT. I thought Dr. Lopes always examined them...so....I guess maybe he will look for the specific part of the brain that allows you to feel your legs and left arm??

They had to do a sternal rub on him to get him to wake up. They changed his foley out last night and they also took the picc line out, they think that was the cause of this infection.

Dad wants to fight through this, he has told us. I don't like to see him suffer, no one does. But, if he were honestly suffering, than he would tell us and he wouldn't want to go on like this anymore. He may be very content in the state he is in and its those of us who are watching over him that are suffering. When its his time, it is his time. He will know when that is and will make that decision. Until then, all we should do is support him, sit by him through his illness and do whatever we can to make him better. I certainly am not giving up until nothing further can be done. I know he would never give up on us.

Today

Tehy tried weaning him today but to no avail. He numbers started falling. He is still really tired. Still waiting to hear any sort of significant words from any of the rehab facilities and from the doctor on his legs.

Infection

Dad has been placed on 3 more antibiotics. They are pulling his Pic line out, they think that may be the root of his infections. He is not weaning today either. He is still very sleepy. Martha forgot to ask about his legs, but the doctor is coming again tomorrow so she will ask him then. She also has a voicemail into Valerie on whether or not she has heard anything about transfer, although I don't think he will be going anywhere for awhile. They are doing a head CT tomorrow just to see if there has been any changes.

Monday

I dont have much to report. Waterloo is still giving Valerie the runaround still. Dad isn't weaning again because of his temperture. They are giving him Tylenol to try and bring it down, plus the debrided his wound this morning and I am sure they gave him some pain pills for it. Valerie is still waiting to talk to the doctor there about dad not being able to feel his legs anymore, so we will see about that.

Thats all I have for today.

Happy Father's Day!!

Dad is not weaning today. He is really tired. The doctor wanted him to rest one more day. I think this infection is affecting him a bit more than normal. When we left last night he wouldn't even wake up when we told him we were leaving. I was so tired last night, I was out by 10:30.

We went to Borders this morning and bought dad his Fathers Day present. We got him two Audiobooks: Tom Brokaw: The Greatest Generation and The Twilight Zone Radio Dramas. We are listening to Tom Brokaw now, but he is falling asleep. He may need to listen to this one he isn't so tired. It is pretty interesting though.

I rubbed lotion on his arms and legs and did some range of motion for about an hour. He seemed to enjoy that.

Scott and I decided to check out Waterloo if dad gets accepted first. Take a half day off work and drive up. We didn't want to impose on Father's Day, plus Scott wants to get home to be with his son.

RML

We got here today about 1 o'clock. Dad was sleeping. He has another infection which is gram stain negative. From what I read, the difficulty with that is the bacteria cell wall is more difficult to penetrate with antibiotics. They do have him on a new antibiotic, so hopefully it will work like all the other ones he has had to take.

We stayed for about an hour. Valerie's was working today and we spoke with her for a bit about rehab facilities to check out today. We ended up going to 2. Holy Family and Ballard. We went to Holy Family first, it was nice. The guy who showed us around was very informative. It was a quaint, homey type place. I liked it, but they don't have a contract with dads insurance company. He mentioned we could request his insurance company do a single contract, but those are hard to get.

We then went to Ballard. This place is sooo awesome. The entry way is like a 5 star hotel. The rehab facility is unlike any I have EVER seen. They have a car inside for patients to practice getting in and out of, a replica of a grocery store, an ATM, bedroom, kitchen, shower, etc. Everything you could possible need for rehab. There goal is to get you weaned and physically rehabbed as fast as possible. They do rehab 7 days per week. Scott and I REALLY loved this place.

We are swinging through Waterloo on the way home tomorrow to check it out. If it isn't even close to Ballard, Scott and I are pushing for staying in Chicago.

Dad says he cant feel his legs anymore and Valerie was in there when we were poking him too, so she is going to investigate into that further. I hope its nothing serious.

We are going back to the hotel soon. Scott broke his leg walking into a fire hydrant outside this hamburger place called Five Guys Burger and Fries. It was funny.

Hey

Dad has been weaning since yesterday and he is up sitting in a chair!!! He is on antibiotics again of course. Scott and I are heading there early tomorrow morning and we also have a meeting to tour a place in Des Plaines, IL. Its a Catholic facility so Martha should like it. :)

On a sad note, a past Carlisle Fire Department member passed away this morning. Gene Evans died of cancer. My thoughts go out to Gene's wife Jennifer and their children and family. ;-(

Sweet

A little bit of info....dad weaned for 83 hours!!!!! They took him off at 730 last night because he got a temp of 101. So they are doing cultures and all that jazz to see what type of infection he has. I think he has had quite a lot of interaction with people since our meeting and has been much more alert because of it. When I go there I tend to only bother him with things every once in awhile and spend a majority of my time watching TV in his room or on the computer. I think this weekend, I will keep the computer away and engage him more. Yaay!!

I dont even know where to start!

I will first start off with some fantastic news. Dad has been weaning since Sunday morning which is like 76 plus hours and is still doing great. I find it interesting that he has been able to wean this long after I threw a semi fit in Monday's meeting saying that I didn't think they were challenging him enough and a lot of times I thought he was getting put back on the ventilator for stupid reasons. Now look at him. Of course, I can't take all the credit, he is doing a great job and this may be coincidental. Who cares, he is doing it!!!!

Martha, Scott, and Jordan stopped at the place in Rock Island on Monday night. Sort of a surprise swing through during dinner hours. Jordan text messaged me that Scott thought the place was 30 years behind everything else, they didn't offer respiratory care 24/7 and blah, blah, blah. Well, I shut that idea off and so did Scott. I might be recapping some stuff here too, so sorry if I am.

I called Harmony House and the gal there was SO great and said they would get him in ASAP and even went as far as saying she was trying to find a way to get dad in there by moving around some patients. I told Martha to call her and she did. I didn't talk to Martha about it until after work and after the fact that I talked to Valerie, dad's case manager at RML.

I talked to Valerie about 5 o'clock. I told her that we basically were wanting to veto Rock Island, due to lack of 24 hour RT therapy and overall felt unenthusiastic about them being able to treat him successfully. When I told her that they didn't offer 24 hour care she said she didn't know that and also vetoed that idea. So I asked her what happens if we can't find a place that can handle him, and have to wait for a bed elsewhere. She said that insurance would pay for him to stay at RML, however, they will eventually start pushing her to find another facility. I said, "Well, that's good then because there isn't one, we will have to wait for Harmony House to open up." That's when she said no, that there were other places in Illinois that she would feel perfectly comfortable sending him to.

That is where I was confused. At some point during all this, I had it in my head that the only places in the Midwest he could go to was, Waterloo, Rock Island or Omaha. She was just trying to find places closer to US. Well, that gives us more options, but we had all our bets on Harmony. I called Martha after talking to Valerie and she said that Natalie at Harmony told her that they wouldn't even be able to get him in until FALL OR LATER!!!!! Those words NEVER came out of that woman's mouth when she was talking to me. I swear I am so SICK of talking to people who OMIT facts or aren't forthcoming with me!! ARGH!!!

So, I called Rock Island today and I spoke with the director there. She basically said that the person who showed everyone around didn't really know what they were talking about. She said that the facility was an old building, but she assured me that they have up-to-date amenities. They do have a full time RT on staff, but since this is a skilled wing, the nurses there HAVE to be trained it all RT responsibilities. They have physical therapy and occupational therapy that comes in and works with the residents. They also have a dedicated wound nurse who can does water lavage and can use a wound vac if necessary. So, I felt a lot better about that place after our conversation.

This is ultimately Dad's decision as to where he goes. I think we should explore all options and put him in the absolute BEST place for the 130 days that the insurance will pay for to ENSURE he gets the MOST out of his treatment and could potentially have a more successful outcome. If we take him to a sub par place that makes him "comfortable" then, he wont thrive there. So, in the next few days or week even, we should have a better idea where Skippy is going.