Sunday, February 28, 2010

Sunday Feb. 28

It is the last day of Feb. and the last day I got to spend time with Dan for a week. He was resting well when I got there this morning so I just quietly sat by him and read. When he woke up he was glad to see me. :) Although it didn't really feel like Sunday, a gentleman and his wife brought the sacrament around so we got to partake of that. He told us that they have Sacrament Meetings in the Dinning Room every Sunday at 10:30 so maybe next week we'll be able to go.

With some help we were able to get Dan up and into the wheelchair and he actually moved his feet to help. He sat in the chair until he'd finished with his lunch.

When we had lunch I encouraged him to eat as much of it himself as he could. I cut up the carrots for him and he was able to eat quite a bit without my help. Eventually, I helped him finish things off and he quit when he was full. I noticed that he put his whip cream from the apple crisp on top of the turkey and gravy. When they first brought it in he asked what he should eat first and I told him that he could eat whatever he wanted to eat first. He looked at the tray and then said he thought he should probably eat the desert first. I told him that he could do that if he wanted but that usually we saved desert for last. So, he ate his dinner first. You've just gotta love that man!!!

After lunch we moved him back to the bed and he let me put some cream on his hands and feet. I rubbed his feet for quite a while because I figured it would feel good. And, MIRACLE... he let me rub his right arm and hand. They didn't hurt him today. I was able to move his hand into a more natural position and then move his arm to cross his body. I told him to hold his hand to his heart so he could feel it beating. I was so excited that it didn't hurt him today. I'm sure with some therapy he'll be able to use it again.

I'm getting excited to have him come home again. All in time...

I drove home this afternoon under beautiful blue skies and 50 degree weather in SL. There was snow on the ground starting at about Tremonton but sunny skies almost all the way home. Good Day!!

Saturday, February 27, 2010

Saturday Feb. 27

I got to spend the whole day with Dan today. I got to feed him and cover him, uncover him, put his socks, take his socks off, give him some water and put my hand on his chest. But, I could not touch his right arm. It's sooo sensitive ~ like raw nerves and it hurts for him to even move it. He has a large bruse on his right side from the fall the other night.
Kristi and Haini and family came up and visited with him for quite a while.
They brought him some ice cream and he ate quite a bit of it before we gave the rest to the kids. While they were with him I went with the social worker to fill out some forms. She was a great help and I think I'll be able to finish most of them for her this coming week.

Later, we were able to get him out of bed and into a wheelchair. With support he was able to move his feet about a foot or so from the bed to the chair. He enjoyed getting out of the room and going around the facility. We bought him a gatoraide from the vending machine and then went back to his room.

He slept off and on but never very deep. After dinner, Gracie and Stephen came to visit him, too. Dan was getting restless and we needed to leave so he could relax.
He didn't understand that he needed to stay there. He told me that before we could leave he would need to get up and get dressed and I would have to check him out.
I had to tell him that he needed to stay there but that I would come back in the morning. He got angry at me but then he was sad. The longer I stayed the worse it got so finally I just had to tell him that I loved him and would be back in the morning.

There's still so much that he doesn't understand about what happened to him and what will happen. He knows he hurts and he doesn't know why. It's so sad. I'm so glad I get to spend some time with him each week.

I think we'll be able to take care of him at home but it's going to take a lot of work. Perhaps he'll be better before he comes home. I miss him!!!

Gracie, Stephen and I went to dinner and then the soaked in the hot tub with me for a while. They are taking "crazy" pictures of each other while I am writing this post. It's fun to have their company.


Friday, February 26, 2010

Friday Feb. 26

I've always enjoyed Fridays but for the next few weeks I'm going to absolutely LOVE them. First of all, I slept in past 5:00 AM and even felt rested when I got up at 7:00. I was able to go to Tessha's dr. appt. with her and it was the first time we have spent more than 10 minutes together for at least a month. It so good to have my best friend home again.

Around noon I was packed and headed for Utah. I was going to see Dan. Even though it was just a little over a week since I'd seen him, it felt like forever. I knew he had probably made some progress while I was gone and I was excited and apprehensive about all of it. I actually spent the first part of the trip talking to Tessha on the phone (hands free) till we lost connection around Malad. So, I called Penny after that and visited with her till I entered the SL traffic. She was with Julia going from SL to Logan. We must have even passed each other on the freeway during our visit. Those two phone calls made the trip go much faster than it could have gone.

When I got to SL I looked for the place where I am staying and after unloading the car I found my way to the Willow Wood Care Center. Tessha had given me excellent directions and it was actually pretty easy to find. I was so excited when I entered the building and the first person I saw asked, "Are you Dan's wife? He has been so excited for you to get here." They had him all cleaned up, shaved, hair cut and smiling. It was sooooo good to see him. I can't imagine being separated from him for any longer than a week. He was happy to see me and he knew who I was.

In fact, he's made some great progress. His language is about 70% better than a week ago. His sentences are generally complete and coherent. Sometimes he got lost in his thoughts but could usually straighten it out on his own. He's still pretty much flat on his back or can sit up with the back of the bed supporting him. He commented that he couldn't feel his feet but if I touched them, he'd say that it hurt him. He eye is all stitched up and black and blue but it will heal and the scar will probably be hidden pretty much by his eyebrow. The thing that concerns me the most is his right arm. It is very tender to the touch and it difficult for him to move it. I'm sure they'll be doing therapy on it but it seems to be pretty damaged. I wonder if it's because he laid on it so long the night he fell out of bed. I don't really know what's going on with it but I know it hurts him.

We had a good visit. He told me about his dreams - way out there stuff and I told him about how he ended up at the VA. He didn't remember much of anything. He said he could remember Paunie talking to him in the car while we were driving to SL. He didn't know all the facts but he remembered her talking to him. He told me that his parents had come to him and told him he had the choice whether to go with them or to return to us. He said that his mother told him that if he returned I would take good care of him. So, he made the choice to stay here. He also asked if I remember being with him in the castle high on the mountain in Germany where he was dressed like a Russian. He said he didn't really like his outfit but he had to wear it anyway. (I have no idea how to interrupt that???) Obviously, I didn't remember the occasion.

The staff was wonderful and very attentive to Dan. They even brought me a dinner so I could eat with him. I fed him his dinner and then ate mine. He did a great job eating most everything he had. I loved it when he asked for his milk and than drank the whole glass without stopping. Oh, those dairy days all over again.

Kristi, Haini and the kids came up to visit Dan, too. Haini is so good to Dan. The first thing he did was to lift him up and put him back upd at the top of the bed so that his feet where smashed at the bottom. He just lifted him up and moved him like nothing. I was wishing they were living with us again just to help do that for Dan.

It is always fun to see their family and of course we went to eat after making sure that Dan was asleep for the night.

I can't wait for tomorrow so I can get back there and visit with him some more. It just feels good to be with him.

Thursday, February 25, 2010

Thursday Feb. 25

It's Thursday but it feels like Friday because as of tonight I'm done working for the week. I get tomorrow off from school and from the Pharmacy. I'm so excited. I'm going to SL to visit Dan. Tessha's been down there during the transition to the Rehab. Center (Willow Wood). And now that she's home, I'll head down tomorrow morning.

She has kept me up on all the happenings and so have the nurses at the center. In fact, today I received several calls. They tell me that last night Dan got confused and tried to stand up to go to the bathroom. Well, he doesn't stand on his own now so of course he fell over and ended up cutting his eye. They rushed him to the ER at the VA where they stitched him up and settled him down. They also put the catheter back in so that he doesn't have to worry about getting up to go to the bathroom for a while longer.

He's been a little disoriented about where he is and why he's there but I think it's really helped to have Tessha close by. Kristi and Haini and family have also been there to visit him. I think it's so important to keep family with him as much as possible and I'm already dreading coming home on Sunday night. It's just not enough time to be with him. But, I plan to go every weekend while he's there. Eventually, he'll come home with us and we'll apply for all the help we can get for him here.

Well, I'm going to go to bed soon. Tomorrow will be a big day with Tessha's dr. appointment in the morning, getting ready to go and then heading down to Salt Lake. I hope to be there before too late so I have some time with him. Goodnight Dan!
I love you!

Wednesday, February 24, 2010

Wed. Feb. 24

Oh my goodness. I just re-read the post from last night and was ashamed at all the errors in it. All I can say is, "I'm sorry". I must have been even more tired than I thought. I haven't taken my sleeping aid yet tonight so maybe this one will be more correct.

I'm so grateful for Tessha being down there with Dan and relaying information to me. Also, Jan, the Social Worker and Dr. Caton, the Mental Health doctor have been great to stay in touch with me by phone. Jan has worked endlessly to make sure Dan can get the rehab help he needs without breaking our bank. We went through a bunch of numbers yesterday and she said she'd review it all and let me know what the Rehab will cost us.

Well she called back today to say that the VA will pick up the first 20 days at no cost to us. Miracle!! Then from day 21 through 31 it will cost me $15/ day. I was amazed. That is actually something we can do. It was originally $140/day. Another miracle!!! We are being blessed through it all.

Dr. Caton called to see if I had any questions about Dan's meds. I asked him about the Depacote and if Dan was still on all the other meds. We talked about the side effects of everything and decided this was worth the risk. He said Dan was still on the other meds and would probably stay on them. I have to say, I like this dr. He has offered for me to call anytime I have a question and he may be the one who follows Dan in the clinic down there. We'll have to see about that one.

Tessha texted this morning that Dan "is confused and unsettled about checking out. He isn't retaining info. like that he's in the VA and more specifically SLC. You tell him he is checking out soon and going to rehab and he gets flustered and asks again, so the nurses and I tell him each time they see him, which is multiple times in an hour. He still has the catheter in. He is sitting up in bed and yesterday sat in a chair for a while. The back MRI came out clean, there is no disk compression."

His new address is Willow Wood Care Center 1206 E. 4725 S. SLC. Turn on to Bonner Way once you're on 1300 E. There is a Mountain CU. Go north through a light and turn west into a housing neighborhood.

"Good news. There isn't a fracture in his hand/per the x-ray. The Dr. put a comssioon glove on which is tight on his big hands and is irritating. The nurse put a call into the PT, who may let him have a break from it. I fed him lunch and we talked. He lost words but kept his cool, which is better that an hour ago. He remembered he is in the VA but referenced Murray (the location of rehab) vs SLC. Sunday he thought he was in Honolulu and yesterday it was Vienna, Austria."

"I drove out to the rehab where he's going to be with the Social Worker. He still has to get discharged from the hospital so it might be tomorrow. His room is right across from the Nurses Station. It's not fancy but it's clean."

Phone call ~ "Hi Mom, it's Tessha. I have some good news for you. I just saw Dr. Bower, the neurologist. He said that since we've taken Dad off the lithium he's seeing some of his movements start to even out. He said the lithium sometimes looks like Parkinson's and there's a possibly that he might not actually have Parkinson's. Don't get your hopes up but it is possible that in the next few weeks he might even overcome some of the Parkinson's stuff. You might get your guy back. They've also started him on something for his prostate so maybe he'll get a good night sleep tonight. They haven't actually confirmed when they'll move him out. It might be sometime this afternoon or maybe even tomorrow."

I got this voice message just after I got home from school and got the mail. In with everything else was a small yellow envelope with a little card inside. It said
"Hope this helps with your next trip to see you Sweetheart! Lots of Love and Prayers." I have no idea who is it from but they put $100 and a Jamba Juice gift card and an Applebee's gift Card inside. It was post marked Pocatello and I was blown away by the kindness. I can't even begin to imagine who would have been so kind. I will just have to think that it could have been just about anyone. Wow!!! There are angels and they are all around us. Thank you all!!

I can't go to bed without saying how thankful we are for all the sweet people who bring in dinners, rolls, loaves of bread and all kinds of yummies for us to enjoy.
Alisha hasn't had it this good for quite a while now and she's loving it.

Like she said, "Yah, we are being watched over."

Tuesday, February 23, 2010

Tues. Feb. 23

I just got off the phone with Tessha. She had texted me a couple of times today to let me know how things are going with Dad. This morning she said the "Dad had an x=ray on his ram this morning and it sleeping. He is sleeping through the nigh."

"He ate a full lunoh, which is ne. His face is starting to fill in now that he is hydrated. The paind seems to be under contorl and his parkinson's meds are starting tp work. I am waiting to find out about his back mri and then the x-ray on his rt. forearm. The tract infections is improving though they are still needing to catheter him If theu can get him to rfegab. toda they will. It sounds like Jan got the VA to cover the money for all of the first twently days. YEAH!"

I think JAn has does a fabulous job for making thigs work for him.

I talked with Dr Caton about the meds tha the's one and all I can say is hat it's proprobaly the best way for hi to go.

I know there are more things to say, but my sleeping pill is taking hold and I'm not staying with this mush longer. Mabe tomorrow. I've got to get inot be bed soon or I'll fall off where I am. Goodnight everon.e

Monday, February 22, 2010

Monday Feb. 22

Today was a hard day. It seemed like I hit the wall again and no matter how hard I tried to make things work, there was always another fiery dart coming straight at me. I'm worried about Dan getting the help he needs. I'm worried about having the income to pay for the help. I'm worried about not being with him. I know it just sounds like I'm worrying but I'm also trying to put out fires all along the way.

I had a call from Mark at Wells Fargo Auto Finance - no we don't have a loan with them, but it took me two hours with really dumb phone calls to find out what had happened 2 1/2 years ago that I had never heard of before. Now, $699.39 dollars later I can only hope it's taken care of. I will worry about the rest of the bills another day.

I had an appointment with Lori Woodbury today (thanks to Clella) and I fell apart right there and then. She prescribed some meds for me. One to help with the anxiety and one to help me sleep. I haven't been able to sleep good throughout all of this so I think I'm just plain worn out. I'm looking forward to a good night sleep tonight. I hope I'll still be able to function tomorrow.

While I was on the phone with the Wells Fargo guys, I missed the call from the Dr. and the social worker. I missed one of Tessha's calls and Daniel's too. I was such a mess that perhaps it was a good thing I didn't connect with any of them.

After my dr. appt. I called Tessha to find out about Dan and she said they had to put the catheter back in today. He still has a "track" infection. He can stand but can move his feet and it takes two people to get him to the bathroom and then he usually can't go. He's swallowing foods but he can't feed himself yet. They are looking at moving him to the Rehab Center as early as tomorrow but he still has a 1-1in his room there at the hospital. The Neurologist wants to put him on Depacote but he's been on it before and it didn't work for him then. Maybe this time??? Also, I don't know if they've continued to give him his Carbadopa-Levadopa for the Parkinson's and his Memantine for the Dementia; not to mention all his other meds.

The MRI from Friday came back clear - no signs of a stroke but they were going to do another one today on his back to see if he has a disk out. He can't sit in a chair without a lot of pain.

I'm worried that they will move him to a Rehab. Center and 20 days later he'll be released to come home and we won't have him on the right meds or with the help that he needs.

I think I'd better just take my sleeping aid and go to bed. Who knows what tomorrow will bring. I'd just better be ready for it.

Sunday, February 21, 2010

Sunday Feb. 21

I called Dan's room as soon as we got home from Church today. Nobody answered so I called the Nurse's station. They were in the process of changing shifts and told me to call back in a few minutes.

I just got off the phone with Tessha. She had called to say that she was there with Dan. They had him up, showered and shaved and "looking good". She said he's speaking in sentences now and that he said he doesn't remember much of anything. She told him that "basically he'd been sleeping for about 2 weeks and that I had been with him the whole time". He said he thought he could remember something like that but wasn't sure.

He still has a bladder infection that they are treating but his medical needs are slowly mending. When those are all under control, they will release him to a Rehab. Center for therapies, etc. I hope the Neurologist will have a good idea of what meds he'll need before they release him to come home. I want to know he'll be ok at home with us. I don't know how much help Pocatello VA will be so I want all the help he can get from SL while he's there.

Tessha hadn't been able to talk to any Drs. yet about the MRI but she thinks she will when they make their rounds tomorrow. At this point, no news is good news. Dan was sleeping but Kristi, Haini and family walked in while we were talking so I let her go but we'll talk later when Dan wakes up. I can't wait.

It was wonderful to be back to Church today. I have really missed being there, listening, enjoying the Spirit and taking the Sacrament. Everyone was so loving and concerned about Dan. It felt like "home". We are so blessed!! And Dan is getting better!!!

Saturday, February 20, 2010

Sat. Feb. 20

I had to work at the pharmacy today and although I love working there, I missed being at home with Alisha and visiting by phone with Dan. We can't have our phones in the pharmacy so I even missed Tessha's call around 1:30.
She said that Kristi and Haini's family was at the hospital today to see Dan so they called with an update for me.
I didn't get the message until later tonight when I took my phone out of my work bag but Tessha said that Dan is really making progress. Kristi said she could really see a big difference.
He's been kind of agitated coming off of some of the meds he's been on. And the nurses think he might have a bladder infection so they are trying to relief all sources of discomfort so they can tell how best to help him. "He's alert and he's making sentences, not big ones but he's making exchanges with us."
That is all good news. I'm so glad he's there where they can really help him make the changes he needs with all his meds.
Alisha's at the Stake dance and I need to go pick her up and then get home and go to bed. So, good news again today.

Friday, February 19, 2010

Friday, Feb. 19

Fridays are always good days and although today wasn't easy, it was so amazingly good.

I went into school about 6:30 and started catching up on everything. I don't usually see students on Fridays so I have time to do paper/file work, test students and prep for whatever is coming up.

I was working away when the Social Worker (Jan) from the VA called and we talked for a looonnngg time about what Dan is going to need and HOW to pay for it. Right now, it doesn't look like we'll qualify for much help. Like she said, "It looks like you'll be paying out of pocket" for most of his expenses. Now I know we've been blessed to have all that we have!! But, honestly, we don't have that much!! Not enough to cover what he might need.

After I talked with her, I started crunching numbers to see exactly how "short" we'd be and even a third job won't cover it. It was interesting for me to realize I was starting to panic. I don't usually panic about things. Having 10 kids, I found that you can't afford to panic or you'll lose control of what you can do. But, regardless, I was panicking.

My dear, wonderful friend Clella came by and asked me if I wanted to go to lunch with her today. I knew I needed that time away from my desk and maybe then I could pull myself together, so I said yes. She has been fantastic about being there right when I needed someone. And, she honestly cares about it all. She's had her trials and she knows how to handle things pretty good.

Anyway, we talked at lunch and she helped me work through what was really important and promised to help with all the other things, as well. She's a trained Assistive Technology guru(can't remember what it's called right now - part of the whole panic thing) and has access to helpful programs and people. She made me call my dr. right there at lunch (I was too nervous to eat anything anyway) and make an appointment to visit with her about something to help me stay calm and focused. So, I have a dr. appointment on Monday for me :-)

We didn't even get out of the parking lot before she was on the phone to her friends finding out about home modifications and equipment rentals that we might need to keep Dan at home with us. We don't really even know what he'll need but she wanted to be ready to help with whatever we do need.

You can understand that my nerves were starting to settle down a bit. With help like that, how could it be otherwise.

When I got home, I got out the budget and the checkbook and starting paying the bills. We got paid today from the school and yesterday from the pharmacy, so today was a good day to take care of that. As I wrote out my tithing check, I remembered a couple of years ago when the Spirit told me that if I would pay on my gross, I would be blessed. And that was when I got the job at the Pharmacy. What a comfort it is to know that the Lord will bless us. He already has and He will continue to do so. I honestly don't know how it will come about but tonight I have a more comfortable feel than I did today. Thank you Clella and thank you Heavenly Father!!

Tessha texted me around noon to say that "Dad is sitting up having pudding. He did some physical therapy which included standing. They said his legs are getting stronger" and then again at 4:00 to say, "Dad is having a MRI. I'll let you know when the Neuro comes to go over the test. I understand they are looking for signs of new strokes". She called a little later and said they had taken the catheter out and Dan was walking with help to the bathroom. Those are all good signs!! Thank you Tessha for being my eyes and ears, my heart and soul there with Dad.

I also talked with the Psychiatrist today and he said they were going to take Dan off Lithium and perhaps start Paxil and Depacot. We talked a bit about Dan's past meds and the side effects of them and he said he'd share that with the team before they began anything new. He promised to keep in touch with me - which, I think means that I'm welcome to call him :-)

I'm trying to think of anything else new to share, but either there isn't anything or I just can't think of it. Who knows? I let you know when I find out. :-)
Thanks for the thoughts, prayers and comments. I appreciate them all.

Thursday, February 18, 2010

Thursday Feb. 18

This is the first full day for the past few weeks that I didn't spend entirely with Dan. I have to say that I missed him lots. I found my mind wandering throughout the day, just wondering how he was doing, if he was talking any more than before, eating on his own or just resting and getting better.

I did the regular school/pharmacy day and I will say it was good to be back. Everyone is so kind and I could feel their love throughout the day and evening. Although, I am really tired tonight and it doesn't help that I couldn't sleep much last night, I kept trying to figure out how I would be able to get back to SL soon.

I think I'll be able to take sick leave from school on Fridays and the pharmacy is going to let me work Mondays through Thursdays with Friday nights and the weekends off for a while so I can leave Friday mornings and be able to visit with the drs before they're gone on Saturdays. What wonderful places to work with the best people ever.

Tessha left this afternoon for SL. She took the Camary so she could get down there without going broke. I had a little money left from what the brethren gave me that morning so I put that with what little else I had and sent her on her way. She's staying with her good friend Linda F. I think she'll enjoy that visit, too. She will stay there for a few days through the weekend and then we'll decide what to do. I know I'll be going down at least by next Friday. Yeah!!

I just got a text from her tonight. She said, "Dad is doing good. He is resting, sleeping on and off. They pulled his catheter this afternoon, which means he is getting out of bed with help." That is great news!!! I'm so excited for him. I know he's wanted that ever since he woke up. That should be the last tube in or out. And to have him on his feet even for a few minutes is wonderful progress.

Thanks Tessha for letting us know all the good stuff.

Wednesday, February 17, 2010

Wed. Feb. 17

I'm writing this post from home. Yes, I came home today.
Seth and I got up early this morning, cleaned up, packed up and went to the hospital to see Dan. You could hear him from out in the hall. He was moaning and crying out. When we went inside his room he had his sheets kicked off and would not keep his legs down - not a pretty sight. He was yelling at everyone within ear shot.
The 1-1 nurse said he had been like that most of the morning. Nothing we did would comfort him and we had the hardest time keeping his legs down.

His new nurse was a kind lady who sat on his bed and took his hand and talked sweetly to him. He listened to her and said "thank you" when she was done. Eventually he quieted down. Charles, the Speech-Path. came in and showed us that Dan could produce a good swallow and so he would be able to eat thickened foods. With that they ordered him some breakfast that I was able to feed to him when it came. I think he liked having good tasting food in his mouth again. He had some kind of thickened soup, butterscotch pudding, applesauce, milk, and juice. He said the juice tasted like it was "ripe". Whatever that means, he didn't want much of it. But he ate everything else.

A neurologist came in for about 5 minutes. I can't say I was impressed. He said, "I have 5 minutes. What can you tell me?" Then he reached over and turned off the TV that Dan was watching. His first question was to the effect of; How'd he over doze on the lithium. He wanted a history, but only through answers to his questions. It was difficult to explain all of Dan's history and answer specific questions in 5 minutes. Then he looked at his watch and said, "You'll be here later today?" I told him we were on our way home and he said he'd keep in touch by phone. He took my phone number and then visited with Seth a minute about where he was going to school. And out the door he went.

We sat with Dan and he actually rested, sometimes with his eyes closed and sometimes with his eyes opened. After a while, we said our goodbyes and headed home.

It was a quiet, peaceful ride home and I enjoyed just having Seth with me. He's been such a strength to have around. He continually reminds me that "we can do this." Yes Seth, we can do this - together.

Just before I got to IF, Will called to say that they were just leaving SL for the long ride back to Seattle. They will go to Boise (about an 6 hour drive from SL) tonight and then the rest of the way tomorrow. I was so grateful that they would take the time to stay with Dan till today. I know it wasn't easy for them; Will with a new job and Jenni excepting with a 20 month old baby in tow. But, I sure appreciate their support for me and especially for Dan. I really do have the very best children ever!!

I got home to a wonderful dinner of lasagna, french bread and salad brought over by my sweet friend Rita. Thank you Rita!!!

Thank you everyone!! It's good to be home but I really miss Dan. I can't think about it or I'll cry and I'm too tired to cry right now. Guess I go to bed.

Tuesday, February 16, 2010

Tuesday Feb. 16

It's probably my last day down here with Dan. I will need to get Seth back to school and get to work myself. I've been gone since Thursday the 4th and it seems like an eternity. With Dan in a coma for 11 of those days~ it was an eternity. Now real life is setting in again.

With just this one day left, Seth and I got up early, ate a bite of breakfast and headed to the hospital. Dan was still in the MICU and I was glad of it. They have been so wonderful in every way! I knew he was getting the very best treatment there.

He was awake when we came in and he said "Hi" to us but soon he was back asleep. They said he had another rough night and they had given him Loritab to help settled him down so he could sleep. Seth and I read our books and worked on our laptops. I've been putting my 2009 blog posts into Word Document so I can burn a CD of them.

Anyway, we worked while he slept and occasionally he'd wake up but it was good to see him resting.

Around 2:00 the OT came in and quickly assessed Dan, got him up at the edge of the bed and eventually into a chair. Dan was so tired of being on his back that he really enjoyed sitting up for a while. He still is struggling with his speech and language. He can get about 5 words out now before getting confused. In fact, later tonight he said, "I think it would be easier if..." and then it was lost. But, that is 7 consecutive words spoken clearly. He's improving!!!

Seth went for a walk and Will came in to visit. He was there when the OT moved Dan to the chair and I think we were both grateful for the progress. Just remembering only a few days ago we didn't know if he'd even come out of the coma and here he is sitting up and watching TV. He wasn't always comfortable and sometimes he moaned and groaned, but he was conscious.

About 5:00 they were ready to move him out of the ICU into a room on the third floor. It's a nice room and for now he's the only one in it. The kids were able to come in and visit him all at once and even little Preston was allowed in. How nice!!! I like his new nurses and he has a one-on-one nurse who will stay with him round the clock - just in case!!

Dan sat in another chair in the new room for a little while and then he wanted to lay down again. We had just got him all fixed up in bed and he began crying out that he was afraid. He was kicking his legs and pushing with his arms and the nurse looked at me like ??? I told her that he had been on a long list of bipolar meds so she rushed to find out what she could give him. Will and Jenni had to leave about that time. It was so good to have them with us for a while today! They have been fantastic about being with Dan, especially when other couldn't be there.

After a shot into his IV he started to settle down again and we thought it was probably a good time for us to leave him, too. Seth and I went out for a bite to eat and then headed back to Orem. We called Gracie to tell her our plans and to thank her for all her long hours of love and support. She really kept me together that first week. What a weird, wild, wonderful, whacky week. Jamba Juice in the mornings and "It's going to be a good day." Thanks Grace!

We stopped at the Sugies for a little while, had family prayer and said goodbye to them. And then we came on back to our room. Seth is getting a little R&R time at the hot tub right now. When he gets back we'll need to get things packed up and ready to head home tomorrow. We will stop in SL and see how Dan is doing and then go on up the road.

I already know that it's going to just about do me in to leave him here in Utah and go home without him. Just thinking about it is terrible. I know he's in good hands and I know that this is where he needs to be, but... I don't want to go home without him. Like Scarlet said, "I'll think about it tomorrow."

Monday, February 15, 2010

Monday Feb. 15 ~ President's Day

Today was a holiday AND a good day for Dan. Will spent a good part of the morning at the hospital with him. Will has a quiet, gentle manner which exhibits strength and security. I'm sure Dan enjoyed having him there.

I stayed in Orem for a good part of the day. I worked on some computer projects that I've needed to do for a few months now. I accomplished quite a bit and it's good to have that much done.

I did some laundry and that feels great, too! Later, Seth borrowed Gracie's car and visited with a friend in Provo.

Later in the afternoon, I went and picked up Kristi and the kids so they could come over to the hotel and swim in the pool for a while. It's always a treat to be close to the Sugies and have fun with them. I just love those kids (and their parents).

Afterwards, I took a shower and washed my hair. What a great day ~ clean clothes and clean hair. Then I was ready to go see Dan again.

The drive is definitely longer from Orem and I find that I get very anxious to see him. Once I'm on the road, it's hard to wait that long to get there.

Dan is still in the MICU (Medical ICU vs. the Surgical ICU). They've talked about moving him to another unit on the floor, but they haven't moved him yet. They still aren't comfortable about sending him out there alone. Perhaps, when they can find a "sitter" they'll make the move.

It was so good to see him again. He looks good and he's making progress, slow but there is progress. His right hand looks better today than it has the past week. They had to restrain his hands and his left foot again. He keeps pulling on his tubes and they are concerned about that. He was sleeping lightly but would occasionally wake up. He knew I was there and said "hi" once.

I visited with one of the Drs. and he said that they were watching him pretty closely. He kind of laid out a possible plan but everything is dependent on how Dan is doing that particular day. As he makes progress he'll probably move from the ICU to regular floor room and then to a rehab. center/nursing home where he can get OT and PT to help him regain his skills before he can return home. I'm getting excited to think of him coming home but we'll take one step at a time and always remember we're not in charge here.

Will came back to the hospital tonight and sat with me watching Dan sleep for a couple more hours. At one point, a nurse asked him to help move Dan back up in the bed. Dan tends to slide down in the bed and get his feet all smished up at the end so he needs to be moved up quite often. It was fun to watch Will put on the "blue gloves" and grab the sheet. I'm so grateful for Will and for the nurses who take such great care of Dan. I don't want to think of where we'd be without them and without the wonderful children that we have. Thank you all!!

Sunday, February 14, 2010

Sunday Feb. 14~ Valentine's Day

You know the song that says, "Waking up is hard to do"? Well, it's surely been hard for Dan to wake up. He's trying to talk and can say about 3-4 words clearly and then it gets all jumbled up and he gets frustrated. He's pretty good with "ya" or "no" but even then it can take him a few seconds to get it out.

Today is Valentine's Day so I took a balloon to Dan and a box of chocolates to the nurses. I didn't think Dan would be interested in the chocolates since he's still on a feeding tube. They will do a swallow eval in a couple of days and determine if he can eat orally. I don't think it'll be a problem at all.

When I walked in his room this morning he was trying to talk to a nurse but it was rather whinny sounding and difficult to understand. After some ice chips his voice settled a little deeper but it wasn't long before it was an octave higher again. All in time.

Laura and Mark came by to see Dan this morning before heading back to Arizona. We will miss them and they were so kind to come up. Elizabeth and James also headed back to Tacoma this morning. We haven't talked with them but I'm hoping they are about home by now. Will and Jenni may stay on for a few more days. Will wanted to be sure that someone was with Dan if I had to go home. We'll let them know of our plans tomorrow morning. Everyone has mentioned how impressed they've been with all the children and their attentiveness towards Dan. What can you say except that they are wonderful children and love their father very much.

He was rather restless today. I think he tried to say that he wanted to go home or at least go somewhere else which is very reasonable since he's been in that bed on his back for the past 11 days. However, he doesn't seem to remember any of it. He told me once, "I don't understand" and then he looked at the room around him and I figured he didn't understand why he was here. When I asked him that he said, "Ya, why?" I told him a little bit but he wasn't getting it so we went way simple and said, "Because you are sick and the Drs. here can help you." Before we came in the Drs. had asked him what year it is and he must have told them 2004. At least that's what they told us when we got there. I'm sure there will be lots of confusion for a while. Hopefully, he'll be able to process things again soon.

He does seem to understand directions involving concepts at a limited level and he can answer simple questions. At times he reminds me of a young child of 4 or 5 years of age.

After a while there, the nurses needed to work with him so Seth and I left and went down to Little America for their Sunday lunch specials. Jutta suggested it so we thought we'd try it out. It was a very nice, relaxing lunch and then back to the hospital. Kelly and Julia had stopped by and visited with Dan and then we got to visit with them in the hallway for a little while. Will and Jenni also stopped by so that was fun, too.

Seth and I sat with Dan and tried to keep him covered up and his hands away from his feeding tube. When he fell asleep he was breathing through his mouth and his respiration rate really dropped. We had to put the face mask back on him and that woke him up. Oh well, we tried.

The drs. were talking about him leaving MICU today or tomorrow. His vitals are stable but he still is at risk so they are trying to find a "sitter". That is a nurse that they can hire to "sit" with Dan full time. They don't dare sent him to another unit without that kind of care. But, they might have to if there is a need for the ICU bed that he's in right now. When we left around 9:00 they hadn't found someone yet but thought maybe in the morning. I'm glad he's finally to the point be maybe leaving the MCIU but I'm also scared of where he'll be and what will happen now.

They're telling me that on Tuesday or Wednesday the neurologist with do an assessment and the Speech Dept. will do a swallowing eval for him. I've told them a number of times that I want Dan to have his follow up care with the SL VA instead of the Pocatello VA. He just needs a good Mental Health Dr. and a good Neurologist for the Parkinson's. We will drive to SL whenever they say if we can get the kind of care he needs.

I'm hoping after the evaluations we will have a better picture of what Dan will need when he is released. I honestly don't know what that will entail but I'm hopeful that we will find out soon.

Gracie and her friend Steven came up to see Dan around 8:00 and a couple of Elders from the Church stopped by to give him a blessing. It was a nice way to end a pretty hectic day.

We drove back to Orem and visited a little with Kristi and the kids and then came on over to our room for the night. I booked two more nights here since we will be staying until the evals are done. Then we'll have to decide what to do after that.

Dan may be having a hard time waking up but I think that I'll have a real easy time going to sleep tonight. I'm bushed!

Saturday, February 13, 2010

Sat. Feb. 13

Proverbs 3:5 "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths."

This is one of Dan's favorite scriptures. He's quoted it to me ever since our BYU days (and that's a long time ago). I've always trusted in the Lord. After all, it is He who blesses my life and whom I lean on for comfort. He has always been there for me and He has provided miracle after miracle in my life. However, in retrospect I've always "had a plan" too. Mind you, I'm not saying you shouldn't have a plan. I honestly believe that "a plan" can save almost any situation.

In HS I planned to go to college. I even planned what I would study. I planned what to do when I broke up with a boyfriend or when a boyfriend broke up with me. Having a plan made it all easier to deal with.

As a mom, I learned pretty early that things went smoother with little children if I had a plan. I planned to feed them before they got so hungry they would cry. I planned to put them to bed before they became so tired that they couldn't sleep. I planned almost every aspect of the day. It really was the best way to accomplish the many things that had to be done when you have children. I become very good at making plans. Of course, things didn't always work the way I planned but then I'd make a new plan.

This all really leads to where I am right now. Dan is in the hospital in a coma with nobody knowing if he will come out of it or what his condition will be IF he comes out of it. So, I go into the "planning mode". If he doesn't wake up and if he doesn't live, then I proceed with A,B,C,D, etc. to do the many things I will need to do just to get by. Those are pretty basic things - you get him home to Idaho, plan a funeral, bury him (of course I realize these will all be VERY DIFFICULT things for me to do, but... I can do them and will have to do them IF he doesn't wake up.

On the other hand, IF he wakes up how do I plan? I don't know what his needs will be. I don't know what I will need to do for him. I really don't know much at all about IF he wakes up. So, I think day and night trying to make a plan to make it work.

My head hurts and I just can't get a handle on the "If he wakes up" part. As I pray and just talk to Heavenly Father about it, he just says "Be patient". That doesn't really help much with the plan, does it? But, that's really all he says. "Be patient." I trust Him and I know things will work out because He loves me and He loves Dan and He wants only the best for both of us. So, I don't worry about that part. But, what do I do IF he wakes up? How can I plan what to do?

All of these things are swirling around in my head and I just can't make it work out.

Then today as I entered his room and said, "Dan" he turned and looked right at me. WOW!!! Blow me away!!! I say it again and again he looks at me. HE'S WAKING UP!!!

There were small marks of improvement at the first of the day. A hand moving here or an eye contact there. Very small gains ~ but gains!

I sat with him, rubbed his feet, his head, adjusted his covers (at least 100 times), talked to him and watched his every move. People came and sometimes you knew he was aware of them and other times not. But small gains!

Later in the afternoon, Jutta, my angel nurse came in and I was looking in his mouth. Maybe it's a Speech Path. thing, but regardless, I was looking in his mouth. His tongue was quite swollen and then was residue on his lips and tongue. Jutta decided we should swab out his mouth and clean it up. He appeared to like the moisture and especially the clean mouth. We wondered about whether he'd like some ice chips or not but Jutta thought we should have a swallow eval. done first. There was always the chance that he wouldn't be able to swallow correctly and thus asperate. As I was doing a quick eval, Jutta said, "Oh yah, you can do that for us, uh?" I checked him out watching his tongue movements, encouageing this or that movement and sure enough, he had what it takes for a good swallow so we brought out the ice chips. Dan loved it! I asked him if he'd like some more and he SAID, "Ya". Got that? He said, "Ya". When I asked him what he wanted, he said, "more". We got a "hi", "ya" several times and a "no", too. I said, "I love you" and he said three syllables beginning with "I". You can guess what I'm thinking he said.

Jutta and I were almost beside ourselves. Dan was with us again. The Dr. who thought we might want to talk about "Life Options" came in and was teary eyed when she said, "I would have never thought.." She was amazed!! As were we!!! And I loved it!!

I texted the kids and called other family to let them know that Dan was waking up!!! Laura and Mark had gone to the Provo Temple so we didn't reach them till later, but everyone was excited.

Dan tired pretty quickly after all the things we were asking him to do so we encouraged him to rest. I left so I wouldn't jump up and cover him up every time he moved. He rested much better when I sat still but that was hard to do today. So, I left the hospital, took a gift to The Kimball to thank them for a week of great rooms to crash in and then headed to Orem. I had a room there for myself and Seth and I needed to get us checked in.

I had dinner as I imagined I would with Dan on the eve of Valentine's Day and then we met up with the others at Kristi's place. It was so good to close the day with all the children gathered there (except Gracie who was on this amazing date :-) Some of them will be heading home tomorrow and some will be staying. Some even have Sunday clothes with them since they packed not knowing if they'd go to Church or to a funeral.

See, the Lord has a plan!! He knows what will happen and He knows that with His help we will be able to make it work. I'm still not at all sure what I should plan for "if he wakes up" but at this point I'm just going to give THANKS for the fact that he IS waking up.

Proverbs 3:5 "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths".

Thank you Heavenly Father and thank you to each one of you for all your prayers in our behalf. Tomorrow Whispers Joy and Yes, Gracie, it was a GREAT day today.

Friday, February 12, 2010

Friday Feb. 12

It was still quiet in the condo when I left this morning. I felt like I was going up earlier than usual, but in reality it was about the same time of day. Without Gracie, I slipped by the Jamba Juice joint and went straight to the hospital.
The most amazing feeling came when I entered Dan's room and said his name. He looked over at me and held my gaze. I knew he knew that I was there.

It wasn't long before the Dr. came in and did the "swab test" looking for Dan's gag reflex. This time Dan was not only discomforted, he actually scowled at us. He gagged and glared. The Dr. looked at me and said, "Well, are we ready to take out the breathing tube?" I said, "Yes" being very excited at the progress he'd made. The the Dr. said, "Before I do, I want to know if something goes wrong what do you want me to do?" I knew what he was asking and I said, "Put it back in" and when the children come up, we can try again.

So, they removed the tube and Dan did great. They put a face mask on him for a while and then replaced that with the air flow tubes in his nose. Wow, he went from the full face gear to the small, much more comfortable nasal tubes. And he looked great.

They've been keeping him cleaned up and hair combed but he has developed quite a beard over the last week or two. Some like it, some don't. I don't care. It's just so good to see his face again.

He appeared more alert and aware of things going on around him but at times he continued to slip away for a bit. He was mostly restless and his left leg was pumping up and down a good part of the day. He got his voice back and grunted at us when we didn't get what he wanted. For the most part we talked about him being "awake". You could tell he wasn't exactly a happy camper. At one time, I looked at him and said, "I'm so glad you're talking again, but please don't yell at me." And then I smiled at him and he knew what I was talking about. Oh, those tender moments.

The kids came in to visit and left so that another could come in. He had a steady show of love and support!! It was wonderful!! We were all impressed and excited for his progress.

The Neurologists were in and out and quietly kept their findings to themselves. I think it's because they don't really know, but they were the ones who said, "Let's give him more time." So, I respect their wishes to not speak too freely too soon.

A RN who deals with life options stopped by and we visited about what Dan's wishes were and gave us a sheet to review as a family and with Dan, when he can.

Later in the day, the Dr. came in again and we had a talk about Dan's Bipolar symptoms. It's been really nice to be right up front and honest about how things have been, what we've tried to do to help, about where we are in the plan to make it work, what's worked and what's not worked. I think they have a pretty good idea of what we're up against. They have said they would hook us up with all the medical and mental health help we need. I just hope we will get the follow-up that comes with the plan. We will travel to SL for all his needs, but that will be a small cost for the help he'll get there. (I hope)

They didn't give him any sedation to help make him comfortable because they want him to be alert so they can get an accurate estimate of his cognitive skills in the next few days.

So many wonderful family and friends have called to check on him! I've loved the prayers and the support for us. Thank you all!!! I love each one of you dearly!

I will say that at the end of the discussion with the Dr. I said to him that I wished he could have known Dan under different circumstances because he is really an amazing man. The Dr. looked at me and said, "I think we've got a good sense of that watching as your children have come and gone." He was saying that through the love of his children, they could see what kind of man really is. I am so grateful to each of them for all they've done to support their Dad; their prayers, their phone calls, their visits, their love, their tears, their laughter, their travels, their time, their Priesthood blessings! They truly are a witness of his goodness!!

We ended our day today with a discussion of their thoughts and feelings and their suggestions and their offers. And then sacred family prayer.

As I am sitting here writing this blog, I looked across the room where Will, James and Seth are kneeling around our little Preston. They quietly proceed to give him a Priesthood blessing to cool his temperature and help him to feel better. Oh, how I love the Priesthood power and the righteous men who use it to bless others. Oh, how I love the righteous men in my life who strive to serve others with their Priesthood.

And yes, Gracie, this was a Good Day!!!

Thursday, February 11, 2010

Thursday, Feb. 11

Wow! What a full day we've had today~
James, Elizabeth and Seth came in last night and crashed with us at The Kimball. We stayed up and visited for a while but we were all pretty bushed. Grace slept with me in the double bed, Seth slept on the couch cushions in the bedroom and James and Elizabeth slept on the pull out in the living room. Gwen had her own little bed with her.

In the morning we all went to Jamba Juice together and then up to the hospital to see Dad.

Will and Jenni met us there. Dan was about the same as yesterday but when the Dr. came in and did the suction test again Dan was noticeably bothered. So, today he showed more awareness of his condition. Also, his eyes looked a little clearer. He still doesn't focus on anything but they seemed to be opened a bit more and clearer. That gave us all some hope. We took turns going in to visit Dan and I think everyone was glad to see him. We didn't meet with the team to discuss options because we were hopeful that maybe he was making some progress. The Dr. said we should give Dan a "couple more days" to see if he continues making progress. We tried to keep the kids all informed about the change of plans for the day but nothing is for sure...

Paunie, Larry, Cornell and Marlene all got to visit Dan today. Seth was there when they came and after they left, Elder Morgan from the Second Quorum of Seventies came through and visited with Seth for a few minutes, asked some questions about Dan and then left. I wasn't there at the time because I had to go to a nearby WalMart and get a "Leave of Absence" packet. I had to fill out several pages, have the Dr. fill out part and then the hospital faxed it to my store where they will process it for me. It was kind of my friends in the Pharmacy to think of me and let me know what I needed to do. I am really blessed to work with the good people that I work with.

The Kimball had to move us from our room that I'd had with them since I'd come. They thought that maybe they would have a "studio" for us but they couldn't be sure. I checked out this morning and they said to check back with them. We put our things in the ski closet and left for the day. Then after getting the Leave papers I went by The Kimball again and they gave me a key to another room. I got our things and went to the room. When I walked in all I could say was, "Oh my goodness!"
"Oh, my goodness". They had given us the suite. It's really nice a big with a large bedroom, one double bed, two singles and a pull out in the living room. There is more of a kitchen and living room with lots of room for family. It is sooo nice!!





Some of us noticed that today when we entered Dan's room and said his name, he would shift his eyes quickly toward the voice and then they went back to the other side. It happened enough that we were pretty sure he was aware of us there and tried to respond.

There were several of us at the hospital when the Neurologist came in to visit with us. He said he was thinking that Dan's condition should improve and maybe within a couple of weeks he would be fully awake and maybe even able to function at the same level that he was at before he began failing. It's certainly worth the wait. I think everyone agrees with us about him having a "quality life" rather than laying in a bed somewhere for a long time. None of us think that would work for Dan. The Drs. are aware of our desires for him along that line. But, he did show some improvements today and we are excited to see if it continues this way.

After that we headed back to The Kimball. The kids stopped and got some pizzas and pop for us for dinner so we had a nice dinner and a good visit with the kids tonight. I told them that Dad always had a way of getting us all together. I also think it did him some good to hear the kids voices.

So, like Gracie and I say each morning, "Today is going to be a good day." and that's exactly what it was.

Thanks your for all your prayers and love.

Wednesday, February 10, 2010

Wed. Feb. 10

I'm writing this a little earlier tonight. Gracie and I came back to our room early because I feel so totally exhausted. I told her that it's pretty bad to be so tired from doing nothing much all day. I love being there with Dan and I find myself up and down all day, rubbing his feet, adjusting his head or just standing close by and whispering in his ear. Nothing like an usual day, but all the same, I'm tired.

Paunie and Larry got in to SL last night and since they're staying at the same place as we are, we were able to meet up at their room this morning before we headed up to the hospital. It was good to have them here today.

Gracie and I stopped at Jamba Juice for our morning breakfast and then we went right to the hospital. Dan was much the same, however, the attending nurse mentioned that one of the Neurologist had been by to see him and he thought Dan had tracked him with his eyes. We were excited but got no purposeful movements from him when we tried. Later in the day the same Dr. stopped by again and tried to get a response from him, but not this time. Nobody is really sure if he did it even once.

We had a good visit with the Dr. and his entourage of interns when he examined Dan this morning. We decided to leave the breathing tube in a couple more days just incase he starts to wake up. Then he did a couple of other things. One, he took the restraits off of Dan's left hand to see the the movements that we do see had a purpose. The way he holds up his head and leans towards the breathing tube and at the same time raises his left hand makes it look like perhaps he's trying to pull out the tube. So, with the hand released from the restraint we watched. But, his hand never went towards the tube, just up slightly and back down again. We watched this long enough to surmise that Dan isn't really trying to get the tube out. It apparently doesn't seem to bother him, which it would if he were conscious. It's very big and bulking and going right down his throat. So...

Then they did another check. They took a swab that is used to suction out his mouth and the Dr. put it in his mouth towards the back. There was no gag reflex from Dan so he probably didn't feel that either. Not a good sign.

Paunie came in and got to have some time with him, too. I want to think Dan was aware of her there but we don't know so, we'll assume he did. She brought up a book that the siblings have put together about each of them. She had read some of it to Dan on the phone the other day. We'll read the rest of it to him later. She also brought a picture of their Dad that had a special meaning to them all and a book the his brother Gaylin would like us to read each year. I've left them in Dan's room so that others coming to visit him might also enjoy them.

The nurse that attended Dan today is one of my favorites. He is a hard worker, conscienous about Dan and kind hearted. Earlier in the day there was an exchange between him and Gracie and he ended up saying, "I'd rather have a Kit-Kat". When we went out for some dinner we bought him a giant Kit-Kat and I think he liked that.

The Drs. and nurses at the VA have been amazing!!! They truly care about Dan and about us. A residence stepped into Dan's room tonight to ask if we had any questions and that opened up a discussion about "What now?" In the end, she said that she would contact the team that talks with family in this kind of situation and would set up a meeting for the family tomorrow. We will ask our questions, listen to options and ask more questions. Perhaps we can do some Speaker Phone calls with some of the others so they can participate as well. I know we have some pretty weighty decisions to make in the next couple of days. If any of you children reading this tonight want to connect with us, please give us a call so we can be sure to get you in on it.

Like I said, I'm tired,so Gracie and I came back to the room and are waiting for James, Elizabeth and Seth to arrive. They should be here pretty soon. We don't know if they will stay the night here with us in SL or try to get down to Provo and stay with James' sister and husband. They are also pretty tired.

Will and Jenni are a little further out but they will be going to Jenni's friends place here in SL. People sure are good to take care of us. I will check with the girl up front in the morning to see if we can stay here again tomorrow night or not. They may be full up but we'll see.

Thank you all again for your comments, your support, your calls and your love. I don't get to call all of you back, or reply to each of your emails, but I carry your love in my heart each day that makes each day a little lighter.

Tuesday, February 9, 2010

Tuesday Feb. 9 ~ Luke's Birthday

My, the days are passing by quickly. It's almost been a week since we first got here. So much has happened and yet so little has happened. After we talked with the kids last night, Daniel went to the Baltimore/Washington Airport and tried to get a flight out. He spent the rest of the night there only to be told that the airport was shutting down because of the storm. From there he went on to work. One long day for him. Anyway, we appreciate all his efforts to get here. In time...

Will and Jenni called and they are driving over tomorrow and will be here in the evening. James and Elizabeth left Seattle today and went to Portland where they will trade cars with Rob (James' wonderful dad) and then they will come over tomorrow, too. They are going to go through Pocatello and pick up Seth.

Tessha is such a sweetheart to stay put there in IF and to help Alisha maintain some normalicy with school and all. Beside, Alisha has a date to the Sweetheart Ball on Saturday and hopefully all will go well so she can keep it.

Laura and Mark will come later if needed but for now will stay put in Arizona.
Kristi, Haini and Grace have been by my side non-stop and I am so grateful for their company. They help me see good things instead of worrying about the bad. I've loved having so much time with them and with the little ones. They make me smile!

Dan, well Dan's about the same today. There was a new crew of nurses and they felt they needed to give him more time to "wake up" before removing the tube. I appreciate their desire to wait and see. All things in time. Dan was warm to touch today and I love that about him. I would often put my cold hands or feet next to him and warm right up. He never told me I couldn't so I would. I also got to lay my head on his chest today and listen to his heart beat. When we both stand up my ear is just right at his heart level and I often would put my head on his chest just to hear it beating. It was good to do that again today, even if he was laying down.

Paunie called and I put the phone to his ear so he could hear her. Cornell also called and we did the same again. They will both be here tomorrow as well. So much family with us.

I have loved reading the emails or blog comments from so many wonderful friends. Thank you all for your prayers and love!! We will always be grateful for your kindnesses and thoughts.

When Alisha was born and having so many difficulties I was given a little yellow teddy bear magnet that says, "Tomorrow whispers hope." I still have that little bear and Tomorrow still whispers hope.

Monday, February 8, 2010

Monday Feb. 8

It's late and I'm pretty beat but I really want to record some of the happenings of today before going to bed. I'm afraid I'll forget things that I need to remember.

Gracie and I ate breakfast and went up to the hospital around 10:30-11:00. Dan was about the same as yesterday. He was getting a fever again and they were trying to make him comfortable. He was quite wiggly and they said he was real restless last night so they had given him some pain medication to help him relax during the night.

Today they had a couple Neurologists come examine him. They were good and asked questions about his history. Then they excused us and did an evaluation. We didn't see their report today but it was relayed to us that they didn't really have any answers. They wondered about his movements being from possible seizures. We'd ruled out a stroke partly from observation and partly from the CAT Scan that was done a few days ago. They didn't think his movements were related to the Parkinson's either. All and all, they really don't know what's happening to him.

One of the Drs. I like the best said that they couldn't explain why he was "slowly deteriating." That was maybe the first acknowledgement that he wasn't getting better like they thought he might. He's basically made no real progress during his stay and he's never shown signs of awareness. We think he hears us and we have seen what we think are tears at times. But, the longer he's in the coma, the harder it is on him to come out of it and the brain function becomes more limited with time.

When I am with him and see his condition, I just want him to have some peace. It's easier at those times to think it would ok for him to pass on. But, when I am gone from him, I just want nothing more than for him to get better and come home with me. I realize that wish is for myself and not for him, but I can't help wishing it... That is until I see him again. Then it starts all over and want some relief for him.

The Dr. said that his kidneys are making a lot of water so they have to keep a lot of water going into him so they don't stop functioning again. However, all the water is settling in his arms and hands and they are really swollen. His right hand is huge and hard. It can't be good.

I was going to leave to go back home tomorrow. I feel bad leaving Tessha and Alisha at home and not being there with them. I also had thought I'd be able to work a few days and then return to SL. But, when we were talking to the Drs. tonight they strongly encouraged me to stay in SL. In fact, Jutta, my angel nurse asked if she could get my stay at The Kimball extended for me. She called them and they will let me stay here until Thursday but thought they could extend it past that if I needed. So, I won't be going home anytime soon and perhaps they are right about me needing to be around.

They were going to take his breathing tube out a couple of days ago, but they kept putting it off. They had thought that he'd start responding soon after the dialysis. When he didn't they thought it best to keep the tube in to protect the air-way. They had hoped he would regain that ability on his own, but he hasn't. They were going to take it out today but again they thought he would be at risk for asperating without it.

They asked if he had ever mentioned what he would like to happen if he were unable to tell us. I told them about his will and his wish for no artifical life support other than food and water. It was then that they said they would remove the tube tomorrow and see how he would do without it. They have all been wonderful and I couldn't have asked for better care, either in knowledge or in compassion. They truely care about him.

Gracie and I came back to our room and have called the kids to tell them about the decision to remove the tube tomorrow. We don't know what will happen from that point on but we will wait upon the Lord and his timing. He knows what is best for all of us and we don't want anything other than that.

Sunday, February 7, 2010

Sunday Feb. 7


Sundays are usually wonderful days of Spirit and strength and today was no different that way. Luke gave me a beautiful blessing this morning and I felt the power of the Priesthood through him. What an amazing experience to have one of our sons give me a blessing. It makes me really appreciate their father who taught his sons well.
Afterwards, we took Spence over to Temple Square and showed him around, or rather he showed us all the things he wanted to see. It was fun to be with both of them. I'll include some of the pictures here.
When they headed down to Orem I went up to the hospital. Dan was restless and so they were giving him some pain medicine to help him relax. They were going to do a "Pic" IV, take out the catheter from the dialysis and do a Lumbar Puncture (spinal tap) and they needed him to be still and restful for all those procedures. The catheter came out great, the Pic when in great and the lumbar puncture went good too. The Dr. said that the fluid looked clear but would have it tested for any infections.
Other than that, they don't know why he's not waking up and responding. They call him a "mystery".
There is the sweetest nurse here. Her name is Jutta and she's from Germany. She takes the most wonderful care of Dan and of me. She makes sure I'm fed and brings me food from their staff dinners. Today she brought me 7 layer bean dip and chips, lasagna, bread and a salad. Then later she brought over some chocolate cake and milk. She's always getting me ice water and she's the one who got me the room at The Kimball. She said if I come down next weekend she'd try to get me another room then, too. She has made it so nice to be there at the hospital everyday!
It was nice to have some time with Dan this afternoon. It was peaceful and while he slept, I was able to just sit there with him.
I don't know what's going to happen next but I'm at peace with whatever. You know, there's something to say about loving someone so deeply and knowing that you'll always be together in this life and in the next. Besides, when it's someone as good and brave as Dan is, it's also rather exciting.
I think Grace is coming up to stay with me until I have to go home on Tuesday. I sure do love my children and I so appreciate all the people that are remembering us in their prayers!

Saturday, February 6, 2010

Sat. Feb. 6

Today started out with a wonderful surprise. Luke called to say that he and Spence were flying into SL to be with Dan. Grace had stayed the night with me and I sure enjoyed her company. After we had rested a bit, we got showered and cleaned up and headed for the hospital. We stopped for a Jamba Juice on the way.
Dan was about the same. He moved more today trying to adjust himself. He's really too big for the bed and I'm sure he wasn't comfortable. His eyes were open a good part of the day but he never seemed to focus them or indicate that he was able to hear us. I got in nice and close and told him that Luke was coming. Right about then, Gracie said, "Mom, is that a tear?" It appeared that there was a tear coming from his left eye. Perhaps, he had heard.
He's running a fever so they had him covered with a little hand towel and Grace did a great job helping me keep him comfortable and cool.
Luke and Spence got in around 3:00 and came straight up to the hospital. It seemed like Dan knew Luke was there talking to him. He would put his head close to Luke and one time I thought I saw Dan's hand trying to reach for Luke. I can't say for sure, but it very well might have been his way of responding to Luke's voice. One of the Drs. told us that if he wasn't responding any better tomorrow they would do a spinal tap and see if there was any infection in the fluid. His arm is looking a little bit better and his fever is slowly going down. They started an feeding tube so he's getting some nutrition. After spenting some time with Dan we left to get something to eat. It had been a long flight and everyone was hungry.
After dinner, we came back to The Kimball and got things settled here and then connected up with Kristi and Haini and went back up to the hospital. Luke and I were with Dan and then Haini went in with Luke for a while. Kristi and I went in last and stayed till they were ready to kick us out. Dan seemed a bit more relaxed tonight.
Luke and Spence are spending the night with me at The Kimball and Gracie went home to Provo so she could go to her ward tomorrow. Her friend invited lots of their friends to join in a fast for Dan tomorrow. We know he is in the Lord's hands and with that we end another day.

Friday, February 5, 2010

Friday Jan. 5

Lots has happened over the past two days and I'm sure it's not over yet.
Thursday morning I got up, got ready for work and went down to Dan's room to give him some breakfast and his morning meds. He wasn't in his bed and since he hadn't been able to walk I didn't think he'd gone far. He wasn't in his bathroom - I thought not. And then it dawned on me. He was on the far side of his bed. There is about 8-10 inches on the wall side of his bed. I use that space to walk in while making his bed. There on the floor was Dan. He was smashed between the wall and his bed. Just try to imagine a 6'4" tall, big man smashed into 10 inches. He wasn't able to talk and in fact I don't remember him making any noise at all. I called for Alisha and asked her to call Bishop's house. It was about 6:00 AM but he wasn't home. His sweet wife said she'd call someone to come over and help us. It didn't take long and Brother Dean Cowley was there in the room with me and with both of us working on him, we were able to get him on the bed. Mostly, it was Dean who was able to lift him up and lay him back on the bed. Dan had really scraped up his face, right arm and feet from the stucco surface of the wall. I'm sure he had tried to get himself up and just couldn't. Even the thought of it hurts!! I knew then that we couldn't wait for the Poc. VA to call us so that we could see a Dr. I knew we needed to leave as quick as possible to get to SL.

Dean went home and made some phone calls and I got a bag packed and Dan ready to make the trip. Within 1/2 hour we had Brother Cowley, Pres. Reilly, and Brother Park at our house ready to move Dan upstairs and into the car. Before we moved him out of his room they gave him a Priesthood blessing. I can't remember right now all the things he spoke but I know the Spirit was there and we were comforted. Then they each took hold of Dan and although it wasn't easy because he wasn't really coherent (like dead weight)they got him up the stairs and into the car. We got him buckled in and came back into the house where they gave me a blessing, too. Again, I don't remember a lot of it, but I do remember hearing about angels guiding us and to enjoy their presence.

They gave me some cash for the trip and sent me on my way. I remember watching Alisha stand outside waiting for the school bus and then driving off. Dan wasn't really "with me" during most of the trip. I made a few phone calls while on driving to let family know what was happening.

We made it to the VA hospital in a little over 3 hours. Dan was very out of it most of the time. He moaned a bit off and on but he never answered me or even tried to. I think he could hear me but wasn't able to respond.

I drove right up to the front doors of the hospital and ran in. I asked someone where the Emergency room was and then I went there. They told me that someone at the front desk would get me some help if I needed it. I told them that my husband was in the car and that I couldn't get him out without help. They got a wheelchair at first and when they saw him they went back in for a gurney. Three men lifted him out and onto the gurney and then they took him in to the ER. I had to go park the car and then I ran in and they showed where they had taken Dan. I went into an new area where kind lady pointed to a curtain. I could hear them trying to talk to him, behind the curtain so I stepped in and saw 5-8 Dr's. standing around him. His shirt was off and there to things on his chest. They an IV in and were working on him. They asked me if I were his wife and then escorted me outside to where the lady was sitting. She was so kind. She stood up and gave me a big hug and held me tight while I cried. I hadn't cried until then and it was a relief to have someone hold me. She stayed close by and was there for me whenever they stepped out from behind the curtain. Her name was Meagan but I called her an angel. When things settled down a bit she left. I think perhaps she had been there just for me.

After a while they let me see him. They had to put in a breathing tube because they were afraid he have trouble breathing correctly. I was able to stay with him until they took him to the ICU. So much has happened that it's hard to remember everything.

They ran some tests and decided they needed to do a dialysis. His kidneys were not functioning and we don't know why. It could be because he wasn't getting much liquid in and they might have started to shut down because of that. Anyway, because they were shutting down, his lithium level has increased dangerously high. Normally, it should be about 1, his was 4. The dialysis would help clear that up. They thought they might have to do it a couple of times. They started about 4:00 and would run it till 1:00. However, somewhere around 7:00, he passed a clot and they had to start over. Eventually, they ran it until 5:00 this morning.

Kristi, Haini, kids and Gracie all came up to be with us. They allowed two of us in at a time. Haini gave him a wonderful Priesthood blessing and I really appreciated his words to Dan. They wanted us to leave for a bit so we went to dinner at the Chuck A' Rama on 5th South. It was good to relax for a bit with family. After that the Sugu's went home and Gracie went with me back to the hospital. They kicked us out at 10:00 so we headed to Provo. Gracie went home and I stayed the night at Kristi's.

In the morning, Sitani got up and came laid on the futon with me for a little while. We got up and went to get some groceries at WalMart. Then I came on up to the hospital. (I need to get back there now so I'll work on this more later.)

He is about the same as before. His right hand and arm are really swollen up and they are trying to keep it elevated. One of the nurses asked where I was staying and when I told her in Orem, she got on the phone and got me a room at The Kimball.
I can stay here till next Tuesday and all I have to pay is $30 for the cleaning fee. The nurse said that they do that for families of vets. in the hospital. It's a really nice place with a bedroom, walk through dinning room and a living room/kitchen combo. I can get a few groceries and have a comfortable place close to the hospital. I will miss the Sugu's but this is much closer to Dan.

Gracie came up around 8:30 and stayed with me at the hospital for an hour or so before we left to come here. She's going to stay the night with me. I love having her here.

A bit more on Dan; he's still in the coma. I kept thinking he'd wake up and all would be well. They said getting the lithium out would clear up lots of the inabilities; like talking, thinking, etc. But, he still hasn't awaken. They are attaching another IV tonight or early tomorrow morning for easier blood draws. He's had a slight fever so they're watching that. They are so good to keep him comfortable and good to me, too.

Anyway, that's what's happening now.
I know this is all jumbled up and probably doesn't make much sense, but that's about where I am right now. Maybe later I can correct it and make it sound better. Maybe later. Good night.

Wednesday, February 3, 2010

Wed. Feb. 3 ~ James Birthday

I got up earlier today (4:45) thinking that would give me enough time to get Dan changed and fed before I had to leave. I was surprised how much longer it took than I had thought. However, it was sooo nice to know he was clean, dry and (no, not at all full) when I left. He still won't take much food. Believe me, I try! He takes what he wants and then he's done.
Anyway, I came home at noon today and he was in bed but did not feel good. He's been a bit hot today - maybe a slight fever. I tried to feed him some chicken and rice and strawberry jello dessert for lunch but again, a few bites of both and he was done. He drank about 1/2 bottle of Ensure. Not enough to make me feel good, but he was done. His bed was wet so I tried to get him to his chair so I could strip the bed and wash the sheets. We didn't make it to the chair. He went down right by the bed and again, I couldn't get him up. I fixed him with lots of pillows and a blanket and then started on the bed. I was able to get it washed and back on before I left for the pharmacy. He took his noon pills but not his evening ones today.
While I was waiting for the sheets to wash, I started calling the VA. I called Colleen who had called and left a message on Tuesday. I got her answering machine. She said she checks her messages twice a day and would call back when she could. She has not called back yet and it's 10:30. Then there was another message from a Lisa. This one bothered me because she was insistant that Dan come to Pocatello for some lab work that the Dr. wants down immediately. "At (his) age, (he) should be able to travel to Pocatello and save the VA the money from having the lab work done in IF. (I won't mention here that I've had to pay for some of the lab work that the VA had ordered done here in IF because they have refused to pay for it.)
Anyway, I tried to call Lisa back and explain; Dan can't walk and can't talk and has pretty much quit eating and I can't lift him at all. I told her that I've been trying to get a VA dr. to see him but I can't reach anyone to talk to. Of course, I was transferred to her voice messages so I told her that if she would like to give me a call back I'd be glad to visit with her about the lab work that the dr. wants.
I've not heard back from her, either. I called the VA Urgent Care there in Pocatello and some very nice Travis listened to me and said he could help. He would transfer me right to Colleen. He did and I got her message machine again. I told her that I had already left a message for her.
I've decided that if I can't talk to someone tomorrow with the intent of having a dr. see Dan, then on Friday morning we would find a way to get him upstairs, in the car and we would go directly to the VA hospital in SL, right to the ER to see a dr. I'm telling you, if this is the best Government Health care we can get... we're all in deep trouble!!!! You'd think it would be better for our vets. - NOT!
Anyway, I got the bed together and then called Bro. Tobias. He came over and helped me put Dan back on the bed.
Alisha came home soon after I left and she tried to get him to eat something, but....
He was awake when I got home so I changed him and tucked him back it. He's got some very small black dots on his stomach and I'm anxious to have someone look at them. His gums are also bleeding and I often have to wash the dry blood off his lips.
Friday at the latest!!!!