Skype

Scott has been using Skype to call people, so I just set up an account and called Scott. Its really neat, its a video phone deal where you can call people's computers. I called his and he set it up so I could see dad and he could see me. He closed his eyes and stuck his tongue out at me. HAHA. Skype rules, I am going to tell Martha to bring back the Mac so we can all call him and see eachother.

He weaned for 12 hours yesterday and they are shooting for 14 hours today. He looked a bit tired.

Beep Beep

I love it!!!

Song Playlist

Scott and I created a song playlist for dad at the bottom of this blog. It will randomly play songs that we either know dad likes, or reminds us of dad. You can click on them and play any of them if you want. If anyone can think of any song suggestions for us to add, that would be awesome!!

This is Scott - I just got to the hospital to see dad. I hoped to be here last night, but there was a delay while we sorted out whether or not Liza was coming with me, so I didn't get into town until almost 11:00pm.

Das was awake and alert when I got here at 9, and they started doing the wean around 9:30. His oxygen levels look good so far, hopefully he can make it several hours today.

I'll be here until tomorrow afternoon, and Martha is coming back up on Tuesday (I think).

I'll be reading dad some of your posts, cards, and letters today, and will attempt to trim his beard, which is getting pretty thick.

Old Post

(This is an old post from a blog I don't ever use anymore, so I thought I would put in on here. This is a great but sad memory I have from last summer when dad was doing really good.)

My dad retired from the Fire Dept in 1993 after joining in 78. He kept active though administratively until this year. He was an integral part of the deptartment's budget and dealings with they city to add new equipment and fire trucks. He has also been there to capture thousands of fire's, car accidents and rescues on camera for training use.

Every year there is an installation of the new officers' dinner and awards ceremony. We were all invited to it, along with all honorary members of the department. Scott Burger is the chief and he kept saying he was going to roast my dad. I would have loved that! But, instead he gave a very emotional speech about my dad's 30 years of service and presented him with a very nice award.

I can remember since I was a little girl, my dad running out of the house to go on rescue calls. Or leaving town in the car and him turning back, racing to get to the station to go on a fire. I spent my whole life asking him about the calls he went on. I had the 7:00 test pager tones memorized. That is why when I turned 19, I followed in his footsteps and I joined and was active for almost 5 years. I moved to Des Moines though and had to get out of it. I joined because of him and I loved every second of it.

So, he deserved the standing ovation he got. I really don't think he was ready to retire, but he had to because of his medical reasons. I am sure that Scott Burger will still find stuff for him to do.

Change of Plans

Scott ended up going by himslef this weekend, I chose to hang back and take Jordan next weekend. It has been a really long time since she has been able to go see him, so this will work out better. I miss him though. :(

FREAK OUT!!

You may have noticed that I changed my background to black a few days ago. I didnt realize when I did so that I got rid of my visitor meter counter. This page has had over 8000 reads since I started it and 11,000 hits. I like to tell dad how many reads he has so he knows how many people are pulling for him. I SPAZZED out. But, after jacking with it for a couple hours, I was able to get it back and it didnt reset. THANK GOD. Its at the bottom of the page if you have never noticed it.

Feeding Tube

Dad had his feeding tube replaced this morning and the surgery went well. He is sleeping comfortably and probably will all day, so I dont think I will have much to report. Martha is going to talk to Valerie today (She is the patient advocate/placement coordinator lady) to see if she has any information on when dad might possibly be transferred back to Iowa.

Soon I hope.

Yo

They sat dad up in a chair today for a little over 3 hours. His heart rate starting going up so they put him back to bed and back on the ventilator. I guess he threw a fit about it. He did not want to go back to bed or be off the ventilator. That is AWESOME!

They are putting his feeding tube back in at 7 oclock in the morning. They are putting him on 2 different types of antibiotics as a precaution which is also awesome considering dad like to pick up uncommon, horrible infections that most people wouldn't make it through.

He wants to tell Martha something that is either You C, or UC and she can't figure it out. If anyone has any ideas, shoot them at me.

Also, if anyone would like to send cards or tell me more stories, I am going this weekend. Send cards to :

RML Specialty Hospital
ATTN: JAMES SHONING
5601 S County Line Road
Hinsdale, IL 60521

Update

Martha is there now. Dad seems pretty tired today. He weened yesterday for 5 hours and he has been off the vent today since 730 this morning. His red blood cell count is high, and they aren't sure why. One of the doctors is going to come in and check it out.

He is supposed to have his surgery this week to replace his feeding tube, but he won't as long as he is running a fever and has a high blood count.

Jordans Graduation

Jordan graduated this past weekend!!!

It was a very nice ceremony. I wasn't bored once!! I tried to get all the graduates as they crossed the stage, but Stovers was there and their large flash interfered with some of the pictures and made them completely un-usable. Thats okay, I was just taking pictures for fun anyway.

Saturday was Jordan's party. I have never seen so many people through the house. She certainly has a ton of friends. My cousins from Oklahoma City even came down. They were here anyway, but it was nice to see them.

A few of the girls Jordan was adopted with were even there:

Debbie was in Chicago with dad. He was VERY alert. Debbie says that she hasn't seen him doing this well in a very long time. He was asking a lot of questions and she was deciphering as best as she could. He wanted to know how much longer he was going to be on the ventilator and he has been weening for up to 12 hours and even at 12 hours he has still been at 100% oxygen sats, but they are taking him off to rest him.

I guess the doctor there and Dr. Lopes had consulted with eachother and decided that dad will never not have his trach and that he will never swallow or eat again. Apparently they don't know who they are dealing with. Dad is obviously a fighter or he still wouldn't be here. WE WILL SHOW THEM!!

So many people asked about dad this weekend. I can't wait to get him back to Des Moines so he can see for himself all the people who still think about him.

Update of Scott's Update

Jordan had a scholarship awards ceremony last night. Jordan was given a 500.00 scholarship in honor of dad given to her by me and Scott. The award was in honor of dad, recognizing him for his volunteer duties over the years as a firefighter and community photographer. It was very nice!! She also received a wad of scholarship cash for something else I couldn't hear. Graduation on Sunday!

Friday update from Scott

Just talked to Debbie - she said that dad looks a lot better today and has been very alert at times today.

He was able to wean for 12 hours yesterday, which is the best day he's had since going back to RML. He could have gone longer (his oxygen sat was still at 100), but the respiratory staff decided he could use some rest and would try again today.

Clearly the additional antibiotics they put him on earlier this week are helping. He still has secretions from his lungs, but they're thinner and clearer than they've been in a while.

Dad was also excited to hear about Jordan's unexpected scholarship she was awarded at the ceremony last night. She got one of the bigger awards of the evening.

Speech Therapy

Dad has been doing speech therapy and he has been doing fantastic. No one has been there while its being done but the therapist wrote a note today and said he has been doing a really good job. Debbie is there now. He has been asleep most the time she has been there. He only weaned for a couple hours today and he is still running a temperature. She also said it looks like he has lost almost all of the fluid he had on him. Compared to when she saw him before.

Anyway

His feeding tube was clogged and they couldnt get it unclogged and they also found infection. So, he is on another antibiotic for that now and they had to put the feeding tube down his nose to feed him. They plan on keeping him that way for a week or so.

He was very alert today. He weaned for 3 hours today. He has a UTI. They added some deal to help vaccum cough him to get some of the goop out of his lungs. He looks a lot lighter and because of his feeding tube situation he wont be leaving anytime before the 27th.

Wow

Its been awhile since I have updated. I guess I kind of suck dont I? There really hasn't been a whole lot of things to update and its hard to update when Im not there. Martha drove up this morning but is leaving tomorrow to prepare for graduation this weekend. Debbie will be there Wednesday thru Sunday.

He has not been weening from the ventilator very well at all. Saturday he only made it an hour and Martha didnt think he was weaning at all today. He is very alert and is moving his right arm a lot. Almost up to his neck, Martha had to tell him to watch his trach. He is trying to tell her something again, but doesnt seem to be forming words very well with his mouth, or she just can't read his lips.

He now has MRSA in his sputum, so he is on IV antibiotics again. She has not heard back on the chest XRay they did, nor the blood cultures. She thinks that he has lost some of the fluid that he had and will request that they weigh him before she leaves.

His feeding tube is blocked so a GI doctor is supposed to come in and look at him today.

AS long as he is on IV antibiotics, he cant go anywhere, but he is on the waiting list for Harmony House in Waterloo. I can't wait until he goes there. It will be so much easier to see him. However, his level of care will change since it isn't a hospital. ARGH!! I really wished he would have been well enough to see Jordan graduate.

New Post Below- Edit to Blog

I edited the blog to make it easier to comment directly on here for those who want to. I didn't realize before that I had it defaulted to people who had a blogspot account. Now anyone can comment with ease. :)

This is Scott - Liza has now given me access to post updates on here while I'm with dad.

I've been at the hospital with Dad since Saturday afternoon.

He was only able to be off the ventilator for a few minutes on Friday and Saturday, but was over 4 hours yesterday and over 5 hours today. Both times his numbers were strong enough to go longer, but he was tired and requested to be put back on the vent.

He was awake and fully alert on Saturday night and again on Sunday night, but otherwise has been really tired and sleepy a lot of the time.

He's on a beta blocker for his elevated heart rate and blood pressure, and I think tiredness is a sid effect of that.

He is able to lift his right forearm and hand up off the bed now and move it quite aways over towards his abdomen, so that's an improvement I didn't expect.

The respiratory therapists are having to suction him a lot more now, and you can see the infection in his lungs by what they're getting out of him.

He's been trying to communicate by mouthing words, with limited success. I've caught onto a few (adjust pillow, need Tylenol), but a few others we weren't able to get the point across.

I'm here until tomorrow, when Martha comes back.

"transfer"

The "T" word was transfer. He wants transferred back to Des Moines. But he knows he can't until he is off the ventilator. He was off for 11 hours yesterday, so whatever the deal was he seems to be over it. Martha left yesterday, Scott is going in the morning and staying until Tuesday.

Thursday Already

Dad had a horrible time Monday-Wednesday trying to wean. The longest he made it was 20 minutes. He wasn't struggling to breath, his oxygen saturation was just going way low. The respiratory therapist bagged down some saline to hopefully break up whatever is in his lungs and it seemed to work . He is off the vent today and has been for about 45 minutes.

We are still awaiting results from a head and chest CT they did on Monday. They are doing a chest X-ray on him now. The respiratory therapist thought the stuff she was getting out of him looked like the same color as his feedings. It better not be that!!!

He said said yesterday he was scared, but he also said he is still fighting. He knows that he can come back to Des Moines if he can get off the ventilator. He is trying to tell Martha something, so she went down the alphabet and he nodded at T. She then went through the alphabet again and he didnt respond to anything and seemed tired. So, he wants to tell her something that starts with a "T." I bet he is wondering about his new TV he hasn't watched yet. :)

Summary of our weekend.

We left yesterday about 4. Got home at 930. He was doing fantastic off the ventilator. He went 8 hours Friday, 10 hours Saturday and he was at 8 hours when we left yesterday and still on it. Im not sure what he made it to. He certainly didnt want us to leave. He slept most of the time. He would shake his head yes and no to things. He really gave me that look when I told him we were leaving. I hate leaving him there. He is so bored. He really likes the radio on. He doesn't even like the TV on anymore. I had to turn it on for awhile though on Saturday, I got sick of listening to the "Barbara Ann" and "One Tin Soldier."

I really hope we can get him weaned in the 35 days he has there now since he is doing so well. then we can bring him back to Des Moines for rehab!! He is still so swollen though. 313 pounds and didnt lose an ounce of it this weekend, even on lasix.

He is on a different floor. I think its for more complicated cases. Most of the rooms are huge and they have hoyer lift tracks in the ceiling to help move him if needed. The nurses this weekend were great too. They turned him every four hours and she even found some cheaper hotels for us and gave me a 10 dollar gas card which was nice. I just wish he was home. :(

I stole this from Kelly

Some info. found online (I've highlighted Jim's symptoms, etc.):What is aspergillosis?Aspergillosis is disease cause by Aspergillus. There are many different kinds of aspergillosis. One kind is allergic bronchopulmonary aspergillosis (also called ABPA), a condition where the fungus causes allergic respiratory symptoms, such as wheezing and coughing, but does not actually invade and destroy tissue. Another kind of aspergillosis is invasive aspergillosis, a disease that usually affects people with immune system problems. In this condition, the fungus invades and damages tissues in the body. Invasive aspergillosis most commonly affects the lungs, but can also cause infection in many other organs and can spread throughout the body.

Who gets aspergillosis?ABPA can affect people who are otherwise healthy, but it is most common in people with asthma or cystic fibrosis. Invasive aspergillosis generally affects people who have compromised immune systems, such as people who have had a bone marrow transplant or solid organ transplant, people who are taking high doses of corticosteroids, and people getting chemotherapy for cancers such as leukemia. Rarely, persons with advanced HIV infection can acquire the infection.

How is Aspergillus spread?Since Aspergillus is so common in the environment, most people breathe in Aspergillus spores every day. It is probably impossible to completely avoid breathing in some Aspergillus spores. For people with healthy immune systems, this does not cause harm, and the immune system is able to get rid of the spores. But for people with compromised immune systems, breathing in Aspergillus spores, especially breathing in a lot of spores (such as in a very dusty environment) can lead to infection. Studies have shown that invasive aspergillosis can occur during building renovation or construction. Outbreaks of Aspergillus skin infections have been traced to contaminated biomedical devices.

What are the symptoms of aspergillosis?There are many different kinds of aspergillosis, causing different symptoms. As mentioned above, ABPA can cause respiratory symptoms like wheezing, coughing and even fever in people with asthma or cystic fibrosis, and occasionally in people who are otherwise healthy. Aspergillus can also cause allergic sinusitis, and it can cause aspergilloma, or a “fungus ball” in the lung or other organs. Lung aspergillomas usually occur in people with other forms of lung disease, like emphysema or a history of tuberculosis. People with an aspergilloma in the lung may have no symptoms at all. Sometimes they may cough up bloody mucus. People who have invasive aspergillosis in the lung may have symptoms such as fever, chest pain, cough, and shortness of breath. Other symptoms may develop if the infection spreads beyond the lungs. When invasive aspergillosis spreads outside of the lungs, it can affect almost any organ in the body, including the brain.

RML

Well we made it. Left town at 630AM and got here at 1130. Would have been a quicker ride if they werent re-blacktopping the entire interstate the whole year here. I have decided that I do enjoy the smell of asphalt and railroad ties.

Dad is weaning today. Has been since 1030. He weaned yesterday for 8 hours which is really good considering it was the first time he had been off of it for a few weeks. He has not lost any fluid weight, he is still 313 pounds. That is 53 pounds in water weight. I think thats what Jordan weighs.

I showed him the Grand March pictures. He shook his head that he liked them. I also showed him my new tattoo, he stared at it but didn't respond to it. he would probably knock me upside my head if he could.

Anyway, that is all I have for now!

HAPPY BIRTHDAY ZANE!!

Sorry I can't come be with you on your birthday, but I am going to hang out with grandpa!!!

Hitting the road bright and early in the morning. I have't talked to anyone today, so I am not sure how he is. Matter of fact, I haven't talked to anyone since Joan had her surgery either. I swear I am so forgetfull these days. How awful is that that I can't even remember that my aunt had surgery. I would imagine she is okay or someone would have called me.

Today has been the longest day at work ever. BORED!! I think I have read the ENTIRE internet. I looked back and studied my ride progress. In the past 7 days (not consecutive) I have rode my bike 100 miles. The past 2 days of which I only rode 10 miles due to rain. So, 90 miles spread over 5 days is pretty good considering I have ridden zero miles since I was 12. No, Im kidding. I have been toying around with my bike the past few years, but upgraded from recreational to semi-serious. Coleman has too. He even bought BIKE SHORTS!!! Haha. Watch out!!!

Anyway, Ill update more after we get there tomorrow. :)