Monday is the Day by Lane

OK, here we are a few days since the last post. It seems when things are going great, you just forget to do everything. Yes, Diane is progressing well. It is just after 7 PM and we are watching the Hallmark station together. Boy the Fonz is really grey now.

Diane is doing quit well. Though she can't really get around unless she has a wheel chair or a walker when she is really adventurous. She tires out very quickly when exercising or walking, but she is growing stronger every day.

So Monday is the COMING HOME DAY!! She is a bit scarred not having the 'hospital' attention, but we have assured her that friends, family and countrymen will be pitching in to help and assist.

Her voice is a bit different...I think because of the trach she had in, but no problem talking and getting her point across. Before she went in to the hospital she had problems speaking and with hand tremors. No more. Seems something happened to get rid of all those problems.

Once we are home we will need a few days to settle in, so if you wish to visit call Lane @ 801-571-7857 in the evenings and we will get you in as quickly as possible. We just don't know how she will be feeling. I am sure that will be day to day.

We are so thankful that Diane will be home for the holidays. It was hard not having her home for turkey day, but so happy she has been blessed and recovered quickly.

Special thanks to Nikki at hospital, her swallowing coach. Ever done swallowing exercises? First, tongue out and swallow. Second, do that again and again. Third, hold head up for 35 seconds 5 times a day. Fourth, lift head up 15 times, up and down, 3 sets a day. Fun, huh?

She is working on wheel chair 101 and 102. Well you can see she is busy learning basic things again.

Enough for now. We will get further info out soon.

Love you all! Lane

Andy's New Son -- Riley Dixon Clark

OK here is # 5 for Diane and Lane.. Riley Dixon Clark.... Dixon after Diane's maiden name. We are all excited.

Friday Night Lights

Today was another great day for Diane. She is working hard on the bike and walking. And, of course, she is loving life with being able to chow down. Tonight was trout, mashed potatoes and gravy, peas, dinner roll, and orange sherbet, along with a cartoon of milk. She is smiling from ear to ear. And her eyes are full of light again.
Diane is the most popular patient with the staff. I am not kidding, this gal has a sense of humor like never before. All the nurses want to take care of her cause she cracks 'em up.

We are now planning her return. Release date is expected to be 12/14...that is a week from this Monday!!! She is excited to see the Christmas lights and be in her own home. Warm fire surrounded by the family...especially the 5 grandsons. It is going to be a very special Christmas at the Clark home.

We are planning to get a wheel chair for her. We are not quite sure how everything will play out, but we are enjoying our time together. Also in the plans is a retake of Thanksgiving dinner. She wants her stuffing and cranberries!

Thank you all again for your love and support. We must have a good welcome home party at some point.

God bless and stay tuned. Lane o

Swallowing... and some REAL food

Yesterday was the day. The much anticipated swallowing test. They took mom to the hospital for her 2 hour test to see if she had a strong enough swallow to be able to eat real food. The smell of toast has been haunting her for weeks. Well.....she passed!! And according to her, with flying colors. She is a level 3 which means she is not really limited on want she can eat. So I'm sure you can see where this is going. She got her hands on the menu and wanted to order everything and she pretty much did. She told me she had ordered the Quiche, Navy Bean Soup, Fruit Cocktail, Salad, a Dinner Roll and Dessert. For upcoming meals they took her order for she told me she felt guilty and a little selfish. She worried about the starving kids in Africa. Could she really eat 2 Brownies, 3 Sugar Cookies, 2 Pork Sandwiches.....you get the point. She's outta control, making up for weeks and almost months of no eating and food cravings. Good for her!

She is staying busy. She has been working on lot on her different therapies and has made drastic improvements. She now has her hands on a cell phone (thanks Nancy) and it has given her great comfort in being able to now to get hold of everyone....at all hours of the day and night. She is also busy planning Sub for Santa for some of her beloved staff. She's really networking and feeling more a part of the world. She appreciates the visits but is also quite occupied with her busy social schedule. If you'd like to stop by, let us know ahead of time and we can tell you the best time. Short and Sweet is best right now. Thanks for the cards and caring.

Granny and Santa are planning something = Lane

4:15 PM Diane and I are sitting in room #219 and watching the BYU - Utah game. Yes!, BYU just scored their first touchdown. Oh good, this makes Diane feel good. She is wondering if she can watch the second half. These ball games are a bit stressful for her. And she loves the old Cougar blue!!!

Before the game Diane started talking Christmas. Of course, on the top of the Santa's list are the grandchildren. How is she going to get her list taken care of? Well, of course, Santa has elves to take care of that.

Oh, how she wants to be home for Christmas! We will see. She is working hard to regain her strength. She used a walker today to get to her door and back. You know those walkers with the wheels and tennis balls. She was very proud of herself.

I spent some time putting lotion and rubbing her feet and legs. We did some leg stretching and moving. She really wants out of here.

Toast! She tells me she is driven mad by the smell of toast being made. She wants bacon and eggs. The aromas are all around her, and she wants to eat. I know this would drive me out of my mind. She sees the food advertising like the Red Lobster.

Can you imagine not having the simple pleasure of eating and drinking?

Diane's a tuff girl. I have a new found respect for her determination. She has a doubt and struggle here and there but she is working hard. She is going to make it, and make it sooner than I thought. 2 weeks ago she was just waking up from her month long snooze.

Thanks for all the cards that are being sent. Diane has a bunch on the wall and more on her table. She reads them over and over. They are a great help to her and lifts her spirits alot

....so again thank you for the cards.

Diane is taking visitors. Best is afternoon or evenings. Thanks for the visitors that have come by. She tells me it is really really boring laying in bed all day...I wonder why...thanks for the visits. So come on in and visit her. She is talking like a mad women...! Lane

Location

Utah Valley Specialty Hospital

Room #219

306 West River Bend Lane

Provo, Utah 84604

Phone 801-226-5858

Giving Thanks this Thanksgiving Day - Lane

I arrived her at 4 PM and Diane was sleeping. It is now 6 and she is still resting quietly.

This Thanksgiving has been like no other. The expressions of thanks have been much different.

As we gathered earlier today with Diane's family for our annual dinner, the wonderful food was still wonderful, but our thanks giving was different. Our conversation turned to Diane. Our wife, daughter, mother, aunt, and granny.

With Diane on the mend we discussed the past almost 6 weeks. Our feelings of almost losing her to now seeing her alert and exhibiting a much higher level of humor. We told the family of her antics and our conversations. How her strong spirit to recover is.

Having missed about 5 weeks of her life, she worried a few days ago about getting the Halloween candy ready for the kids. One of the last things she was planning before she 'left' us was Halloween. She missed not only Halloween, but her sister Nancy's birthday, her son Andy's birthday, and her grandson McKays birthday. She has only seen pictures of her new grandson born 2 days ago in pictures on a cell phone.

And now she has missed being at the Thanksgiving table with her family missing out on her favorites of stuffing and cranberries.

As I ate and talked I gave thanks. Thanks for a wonderful wife. Thanks for a loving mother. Thanks for a sweet and blessed granny. Thanks for a wonderful friend.

When Diane returns home or as you visit her here, you will find her spirit better than ever. She is working hard, planning for the future, and hoping for good health.

Thanks to all of you who have taken a few moments to brighten Diane's days with the cards you have send. They are like manna from heaven for her.

Thanks for those early visitors to her hospital room. She is inspired and thankful for those. If you wish to visit, please give me, Lane or Christy a call and we will give you best times to come.

So our family gives thanks. Thanks to you all for love and support. It means more than you will ever know unless you have gone through similar circumstances.

And thanks to the Lord for his blessings and tender mercies. We are truly thankful to have Diane still with us to bring us joy and happiness.

May the Lord bless us all as we continue forward.

Diane Clark

c/o Utah Valley Specialty Hospital

306 W. River Bend Lane

Rm # 219

Provo, Ut. 84604

Her Trach and the Sound of Music

Today is a happy day, the day before Thanksgiving. A hurdle has been jumped and what a woman to do it. Mom was able to have her trach removed today. A big step and we are proud of her and all that she has done in her recovery to make it possible. No Thanksgiving dinner for her, ice chips at best. The latest trick that Nancy and I have figured is "Mountain Dew Ice Chips". Frozen Mountain Dew made in to slush...her life blood as she refers to it. Hey at least it's something that she loves that we can "dew" for her. We are hoping to be eating next week sometime.

All of you that know my mom knows that she is a character and I'll tell you that now is not an exception. I swear she is funnier now more than ever. Maybe it's that I appreciate it now more than ever. She told me while laying in her bed in her hospital gown that she felt like she was in the Sound of Music and was wearing her curtains. She wanted new curtains and some ribbons and bows. Too good. We made sure that the staff dresses her so she is comfortable....no ribbons, no bows and no curtains, the curtains clashed with her socks. Everytime her nurse comes in to adjust her feeding tube she says, "Now this is vanilla pudding right? I want it with carmel sauce". She can't stop talking about Pie, Lemon Meringue to be exact and Pistachio Icecream. She is dying for someone to take her on a date for a banana split. Her nurse refuses to oblige. She could smell toast down the hall and it just about put her over the edge. She would have taken drastic measures on a visitor in physical therapy if she could have. This girl sat there eating in front of everyone and I felt quite inspired to take her out for the torture she was putting my mom through. Some people have no clue, or choose not to take one. She tells the staff that she is just so happy to be enrolled in her class course of ICE CHIPS 101 and how thrilled she is that she gets to take 25+ days to learn how to swallow. She is motivated though and that's half the battle. She stood today at the bars for a few seconds and it was celebration.

Mom and I have had some wonderful time together the past few days. Time that isn't always possible in the hustle and bustle of busy lives. Time I would never trade. Time that I thought I would never have. I am so grateful. We talked a lot today about what has taken place to get her where she is today. She told one of the aides that she thought she has been in ICU for 3 days. She looked at me and I told her actually it had been four and a half weeks. She looked surprised. Who wouldn't be after no recollection of having your life fast forwarded and trying to get a grasp on why and how to rewind and replay some of the life she feels has skipped her by. She remembers practically nothing. All the better I suppose, much of it I'd like to forget....the pain at least felt unbearable. We have a new tape set to record and it's going to be an even better chapter in all of our lives. One that we can't take for granted. We have been given a second chance and much good is to come from all of this. Life is worth living. It's actually worth being celebrated. We will celebrate as a family.

Diane DEMANDS Turkey and Dressing for Thanksgiving

Lane (Husband reports) All of us look forward to the BEST meal of the year---Thanksgiving Dinner! And Diane is no different. She wants stuffing, and she wants it this Thursday. She wants to come home for the festivities. She is driving the staff at Utah Valley Specialty Hospital nuts! Having lived for 5 weeks without her gentle demands, I forgot just how driven this girl is. So the staff is trying to figure out how to get her a little turkey and dressing and keep her in the hospital. She is not a totally happy camper here. Yes, camping in a hospital bed is NOT her cup of tea, I mean Mt. Dew!
Sounds like she is getting better, what do you think?

Diane is still being feed by tube directly through her stomach. That simply makes eating no fun. She wants to eat and drink, but no dice. Her only 'meals' are a few ice chips each day. We can't even salt them!
She is kinda going stir crazy. Here mind is back to going a million miles an hour, and she can't do anything about it. She wants to go take a shower. No way unless someone helps her. Her world is laying in bed and trying to figure out how to escape, or what she wants to buy. Hard to do when you can't walk yet.
I have asked for a wheel chair to wheel her around the hospital today. At least get her some different walls to look at.

VISITING NEWS We are starting to allow her some visitors. She is talking and communicationing very well now. We are first hooking her into the ward = bishop, visiting teachers and others. From what I can tell, she will want visitors so get prepared. She will be here 4-6 weeks so we will need you.

PLEASE SEND HER A CARD WITH YOUR THOUGHTS

We have a received a few cards and letters for friends and children. She loves them!!! Many people ask "What can I do for you?" This is what you can do. Please send her a card or even two. She needs contact now and cards are great. We are sticking them up on her door so she can see them. I want to overwhelm her with cards. We want yours there too!

Diane Clark
Utah Valley Specialty Hospital
Rm # 219
306 West River Bend Lane
Provo, Ut. 84604

We watched the Tabernacle Choir today which she loved. It is great to have her enjoying some things in life again. She is taking a nap, so I took the chance to blog.

Thank you for your love and concern. Lane

Wow, Diane is doing much better. == Lane

OK, we have been so happy the past couple of days that we were lax with the blog. As most know Diane receive a traciotomy in ICU. As she started to try and talk it was lip reading 101. We were all frustrated! Weds. she was transferred to Utah Valley Specialty Hospital in north Provo. She has excelled here. As of yesterday, she was hooked up to some contraption that allows her to talk. When I got here around 11 am she was asleep and was so for about 1 hour. I watched her for a bit and did some Internet business.

Well, it is wonderful to talk with her. We are talking family, friends, prayers, what she has been through and, of course, listening to BYU football. Go Cougs.

I have started to read her blog to her. We got through the first week of entries by Christy. It brought back memories and tears to us.

She needed some rest so we shut down the blog and she went to sleep. I thought it a good time to update the blog.

Once again, thank you all for supporting Diane and us. Your calls, food offerings, comments in the blog (which Diane really enjoys, prayers etc. have sustained and blessed all our family.

Diane will be able to have visitors soon. We will let you know when as Diane strengthens. To us all this is wonderful, even miraculous. When you next see her she will look tired, but will be able to communicate with you. To us, we saw her 5 weeks ago on death's door. Wow, are we happy and blessed.... Lane

Miracles happen every day

The therapist that had evaluated Mom yesterday to see whether she qualified for therapy on the 12th floor came in again this evening and asked her to do a few things with her arms and legs....she was amazed. She told me she had never see this much progress so quickly in anyone. She was moving her fingers today which she couldn't do even yesterday. She was lifting her arms and legs with a fair amount of ease. To say I didn't believe in miracles would be like denying everything I know to be true. I truely felt through this that even her survival would take a miracle and to see her now it's truely unbelievable. The tender mercies of our Savior are so evident.

This therapist told us tonight that she can instead of moving to Utah Valley stay within the hospital for therapy. I was baffled, they told us yesterday that it wasn't possible and so we have spent the last 24 hours getting her excited for the change. I asked her why they didn't give us that option yesterday when we were making the decision and she said simply that she had improved so much that she now qualifies to stay. I talked to Mom about it tonight and she still wants Utah Valley so that's where we are headed....to Happy Valley. She can hardly wait to get out and I certainly don't blame her. We have much to look toward as far as improvement but to see what has taken place is so encouraging. I could never have imagined the strength that she possesses. A perfect example of enduring to the end.

The Smile in Her Eyes

I have to say how humbled I feel that the Lord would see fit to keep my Mom with us. Sometimes when I would hope and pray for that I would see that is was because of selfishness. I just couldn't imagine that many years without my Mom. A mother is so much to a daughter, so much that can't ever be replaced. I know without question that if we are prepared with a strong foundation and understanding of his plan that the Lord blesses us, strengthens us and helps us rise to the occasion. I knew that whatever the Lord's plan was and is for my mom that he will help us. I thank all of you again for your prayers. They have been answered in many ways that we understand now and I'm sure in things to come.

The improvements that have taken place over the past week have been many. Our family...well we like to think that we are all pretty hilarious. We liked to make Mom laugh and to see that smile and the light in her eyes come back has been a tremendous healing for all. It's a comfort that penetrates deeply. It has made everything that we've been through worth it. She has much to overcome but I find that she still has her sense of humor, something we appreciate even more. I loved today when talking to her doctors about her physical therapy and about her needing to gain her strength I look to her to see that she has lifted both her arms in an effort to say "Check it out...I am strong, now get me outta here". Lifting her arms is huge, something she couldn't do just days ago. She is starting to realize and become upset by the time that she has been in the hospital and feeling the loss of time and the events that she has missed out on. Just a blink of time in the grand scheme of life I try to comfort her.

With her healing and improvements it's time now for therapy and rehabilitation. She will most likely be moving to a transitional care facility this week. It comes highly recommended and has an incredible success rate especially when it comes to getting the trach out. Incredible success is exactly what we are after. The one downer to this facility is that it is located in Utah County. A little far to bug her a time or two a day but we'll find a way. I'm sure we will be getting to the point of her desiring visitors and a strong support system. After she is settled I'd be happy to pass along info in how you can see her. No children are allowed at any time and you'll have to brush up on your lip reading skills. I'm really trying.

FYI...What is ARDS

Acute respiratory distress syndrome (ARDS), also known as respiratory distress syndrome (RDS) or adult respiratory distress syndrome (in contrast with IRDS) is a serious reaction to various forms of injuries to the lung.

ARDS is a severe lung disease caused by a variety of direct and indirect issues. It is characterized by inflammation of the lung parenchyma leading to impaired gas exchange with concomitant systemic release of inflammatory mediators causing inflammation, hypoxemia and frequently resulting in multiple organ failure. This condition is often fatal, usually requiring mechanical ventilation and admission to an intensive care unit. A less severe form is called acute lung injury (ALI).

ARDS formerly most commonly signified adult respiratory distress syndrome to differentiate it from infant respiratory distress syndrome in premature infants. However, as this type of pulmonary edema also occurs in children, ARDS has gradually shifted to mean acute rather thanadult. The differences with the typical infant syndrome remain.

Diane is past the critical part of ARDS, but the effect and rehab can last up to 1 year. She still has fluid build up that is suctioned out. She is starting to do some coughing on her own which is critical to getting better. Nutrition is still through a hose and will be for some time. Tomorrow is a big day for multiple diagnosis and recommendations of what happens next.

Sunday Morning **November 15th **Lane

It has now been almost four weeks since Diane came to the hospital. Tomorrow, Monday, will be that anniversary. Sorry we have not updated the last two days.

We just finished the Tabernacle Choir broadcast and are now listening to CD's of the choir. Diane loves the choir.

She is very sleepy right now. I did get a look a few minutes ago.

Diane is progressing well. Family visitors have had the chance to talk and get response from Diane. Though she cannot talk yet, she answers with shaking her head and with facial expressions. We mention some of her friends and she smiles and her eyes brighten. I got a big one for Celeste.

With her tracheotomy in now she seems to be recovering a little faster. Some visits her beautiful eyes are bright and wide open. Other times her energy is low and she sleeps or just gives a slight opening of her eyes. With all of this added activity, we have been greatly encourage. She tries to mouth words and, of course, we just can't get the message. They can cap the trach and we can hear a faint whisper. We sometimes get a word or two, but she just doesn't have alot of strength. They do some physical thereapy with her here in ICU which takes a lot out of her, but it is very necessary to start building strength. They told us that rehab is 3 days for each day she is in the hospital. We expect that to be at least 3-4 months, especially not knowing how her MS will contribute to recovery. Rehab will be a little more here in the hospital in a different location and then at a rehab center like Health South. Decisions and location change will be happening this next week.

A few minutes ago we had church visitors who brought the sacrament to her. Again, I touched her lips with the bread. The water was given to her with a stick with a small sponge on it. I soaked the sponge and had Diane open her mouth. She then sucks the water from the sponge. We do this with the sponge often. Diane is notorious for having a dry mouth, so she enjoys getting a little liquid. A couple of days ago Christy and I had them bring in Sprite and we would soak the sponge with sprite. She seemed to enjoy that.

Again, thanks for your thoughts and prayers. Diane has a long rehab journey ahead of her. We will need your continued prayers and help. Lane

Diane is sleeping right now. She does a lot of sleeping.

Moving Forward

When I went in today, I went feeling really optimistic and anxious to have a little "talk time" with Mom. Talking I really assumed would be me trying to read lips but I wanted to catch her earlier in the day when I hoped she wouldn't be too tired. Everything is an effort that sucks every bit of energy she has. Yesterday was so good that I could hardly wait to see her today. I came in and she was asleep. They had the oxygen mask on her face that was pushing quite a bit of humidity to loosen everything in her chest. Good I thought....and I can wait. Her numbers were looking good today.

After a little time I saw her eyes come open and so I approached her bedside. She didn't see me. I told her I was there, she looked over and then looked away. I was heartbroken. I was so anticipating all the good that I hoped the day would hold. Although her numbers are great now she isn't coughing, and that is a problem. I know she trys but she just plain and simply does not have the strength. She is tired and working too hard. I consulted with several doctors and we along with my dad and the family decided that the best thing at this point was to perform a tracheotomy. They did that this afternoon. It was not something we take lightly and wasn't of course what we wanted to have happen but it is a step towards further recovery. I felt good about it and especially that they intended to do it under controlled circumstances instead of having to perform under emergency circumstances. Everything went well and they removed a lot of blockage. I don't feel that it is a step back but an aid to help us move forward and that's exactly what we want.

Cough....and make it count!

My visit with mom started today around 11 am. She was doing her physical therapy at the edge of her bed when I arrived. She was alert (alert as she ever has been through this) and looked my way when I came in. I looked her in the eyes and told her I was there and how great she looked. The physical therapist was good, I hadn't met him before although he worked with her a week ago. He commented on her progress. I was proud. She was able to make an ever so slight move of her leg on command. Something we thought a week ago was the impossible. She sat there for a brief time without his constant support, it was like Christmas had come early.

The next bit of news came from respiratory. They were going to be removing the breathing tube. It is a scary venture but one we have been anticipating for weeks. Her breathing is great, the concern at this point is for her to cough and be able to keep the secretions in her respiratory tract from going in to her lungs. Vicki Linton who has been my absolute greatest support in an effort to keep me sane, my family fed and anything else you can imagine was there with me during this. After the tube came out we went back in to her room. She and I talked with mom about coughing. How many wonderful people in this world would take time out of their busy day to be there with me to talk about coughing to mom, mimic the sound of coughing, and to give her overall motivation to cough? People like her are very few and far between. My kids have found a special place in their hearts for her. Carson who is only 2 thinks she's great. He sees her pull up and her wants to run out the door screaming Vicki! Vicki!

Aunt Nancy is also special to us and to Mom. I can take my boys to her and know that she will love them and take care of them just the same as I would. She even hosted an impromptu tea party as Jackson was especially missing his Granny today. He told me that he loves Granny so much because she is so nice to him. Thanks Nancy for filling in the gap for Granny, you are the next best thing. Nancy has spent countless hours with us at the hospital and was able to visit her tonight. When I left she was pretty tired and was resting. At the point that Nancy went back Mom was trying to talk and I have to laugh because the first thing that Nancy could decipher was her saying that she needed a Mountain Dew. Hilarious... I told Nancy she must have a headache. That was always the second half of pain management when a headache came on. I think she is trying to piece together and try to understand what is happening. She asked Nancy when she was getting out of here....sounds like her too. For now she lives in the moment. She doesn't remember much of anything, even if it happened only hours before....but it's her and how wonderful it is to have her.

Mom and skinny jeans

Boy I sure do love and respect my mom. That is one thing in my life that I have no regrets about and that is I've always been one to tell mom all the greatness I think she is. She is a strong woman both on the inside and the out. MS has definitely taken a toll on her body and what she once was, but she is strong although she'd be the first to tell you otherwise.

I couldn't be happier to see some recognition in her eyes. That has been my biggest concern, not knowing if she would ever come back to us. Right before all of this happened she lost a whopping 40 pounds and now when I see her I hardly recognize her little body as I can see an additional loss. Today during some of my time in her room they had her "dangling" which means they are holding her sitting up at the edge of her bed. 20 minutes of dangling is like running a marathon. She was exhausted. I took one look at her legs and was amazed. Nancy and I looked at one another and immediately thought.....skinny jeans. She has been on a low calorie diet with her feeding tube. Respiratory doctors are unclear in all of their research whether it is more beneficial to feed someone with this type of condition (Acute Respiratory Distress Syndrome) a low calorie diet (500 calories) or a regular calorie diet. Digestion is the last thing your body does in this type of predicament and our worry was for her to be sick and uncomfortable with food and waste that she couldn't process. Today they are going to reavaluate her nutrition so that is good. They are also hoping her condition can improve to the point of taking the breathing tube out. She is very weak and I pray for her physical strength. I pray that her MS won't make this recovery harder than it already is or that it will worsen her quality of life. We continue to pray for everything we will face on the long road ahead.

MONDAY ICU UPDATE 5 PM - MORE IMPROVEMENT Lane

If you can, please leave a comment every so often...we are going to start reading them to her as she becomes more aware.
Visiting Diane by all of her friends etc is, I am sure, weeks away...hopefully sometime in December. We will let you know when it is 'legal' to start visits.
At some point we will have a big WELCOME BACK TO THE REAL WORLD party for Diane.

Nurses report that Diane got a good nights rest and is responding better and more than yesterday. When I left around 4 PM yesterday, Diane had just started to move her arms and head. She also did more visual contact and responding to questions.
Today she is doing more of that. She is more aware of her surroundings. I ask her only questions that have 'yes' as an answer and she does move her head up and down to answer. These are HUGE strides since last Friday when she started just with focusing her eyes on mine. She seems very tired now. Attendants have assisted her sitting up on bed for a few days to get her moving a bit. Of course, she is not doing this on her own, but with total assistance from staff. Nurse reported she has done that 2 times for about 20 minutes each.
I had to wait about 1/2 hour to get in today...they were bathing and washing her hair. She's as pretty as a peach now!
Her lungs are secreting alot of fluid. Her breathing is slower which is good. Her white blood count is 18 down from 19. 10 is normal. She has been as high as 34-37, which was not good. Her hands did not seem as puffy today with water retention.
Air tube still in. She is doing much of the breathing on her own during the day. Her lungs still have to much fluid to pull it. She is now coughing up some on her own which is a must to pull tube.
Pneumonia and infection is still her big challenge. It is a long slow process, but she is fighting.
All in all alot of improvement in last 3 days. It is alot easier to sleep at night and do my daily work tasks knowing she is coming back.
Thanks to all for your love, concern, support, prayers etc. She has a long long road ahead of her and we will need you all for a long time. Lane

A LITTLE MORE NEWS

Talked with Doc and he is pleased with Diane's improvements over the past 4 days. Nurse is here and talking with Diane. Asking her to do body movements. Diane raised her right arm. Trying to mouth words and eyes are more focused. Color is good. She is breathing 95% on her own today. They want her to work and build her breathing and lung functions. They give her more air at night to give her a rest. She seems tired 24 hours a day, but I guess that is expected. Nurse moving legs and arms to keep movement and tone. Been playing music to her all day. Lane

Sunday Morning Nov. 8th, 2009 - Lane

Well, I am not trying to take over from Christy since she does a spendid job in writing, but maybe it is nice for her to take a couple of days off to care for her family and her sanity!.

Diane and I just finished watching the Tabernacle Choir together. The nurses reported she didn't sleep alot through the night so she is quite tired. As I held her hand she again opened her eyes and focused in on me, but soon closed them. As the choir started and sang she would open her eyes again periodically. The nurse also moved the bed so that she is in a more sitting position. Not sure if she could see the TV and the choir broadcast or not.

Here is a little report on her condition. Many things have improved since she came in. Apparently Diane had picked multiple infections and pneumonia problems. The nurse said she just picked them up from being out and about, and with her immune system being compromised with MS, they took hold infecting her lungs and creating septic shock condition, where the blood takes the infection body wide. Antibotics have been her 'main course' of food. Treatment has included many different types, and docs have changed it as her infections have changed. Her battle now is two fold. Getting her lungs back and without infection and fluids and getting her to wake up more. There is always concern with an attack or exaserbation of MS. Her organs etc are much better and so she makes a little progress hopefully each day. The staff is great and are taking great care of Diane.

Her temperature is normal, breathing a little rapid. Lungs doing good in expelling some fluids. They are still sucking fluids out with some kind on pump apparatis and Diane does NOT like it much. She will move her arms in protest and furrow her brow. Still some water retention in the extremeties.

We appreciate your prayers and thoughts for Diane and the family. Thank you for visiting this blog and for your comments. We invite all to leave their feelings and thoughts in the comment section. We will be sharing those with Diane as soon as we can.

We have no idea when she will be out of ICU and can receive visitors. I would suspect visiting won't happen till December sometime. For now it is just her family.

There is a LDS ward here at the hospital, and 2 couples came by a short time ago. One of the sister's read the first verse from "I Stand all Amazed". The 2 elders blessed the sacrament for Diane and I. Since Diane cannot ingest at this time, I was instructed to simply put the bread to her lips. The water was given with a small sponge soaked in the blessed water and I then touched that to her lips. It is wonderful to receive the service and care of others. Again, thanks for your love and prayers. We tell Diane that many are praying for her. We are now listening to Sunday Sounds from the computer. Internet is wonderful. - - Lane

Saturday: Morning 8:30 AM - Lane (Husband)

Came into the room @ 8:30 this morning. Set down my computer and went to Diane's bedside. She had her eyes closed and seemed to be sleeping. I took her hand and gave her a squeeze. She slowly opened her eyes. I moved closer to her and started talking to her. Her eyes focused on me. It was not that blank stare she has had. Her eyes moved away for a few seconds. I kept talking. Telling her she has had pneumonia and infection. How her family and friends are praying for her. Her eyes slowly drifted back to mine. WOW!

The nurse just came in. I told her I got an eye response. She told me that Nancy (sister) and Bryan were in yesterday and that she nodded to questions. WOW! The first responses from Diane in 2 1/2 weeks. It is like Christmas! No, better than Christmas since our time leading up to this 'event' has not been exciting like Christmas. The time has been scary...dreadful. It has usurped my energy and my focus.

Now I am excited and hopeful. The nurse is changing 'connection's into her arm. I told her to make sure and turn on the Tabernacle Choir program tomorrow @ 9:30. Nurse says Christy told her to turn on Matlock too. Our nurse today Alese and she is originally from Boston. She is a skier and moved out here to be close to the hills. Meet her husband online here.

Well, enough of that. Thanks for your prayers. We are hoping for continued improvement. Diane is resting now. She looks very tired. Lane

Eighteen Days - Feelings Expressed by Lane - Diane's Husband

I thought it time I express some thoughts about our family trial.
I woke up this morning with Diane on my mind. I laid there, my thoughts riveted on Diane. I wondered why. Why? I see Diane laying in her ICU bed. I see the air tube. I see her arms and legs which are usually a bit swollen from water retention. But most of all, I see her eyes. Her eyes. As a young man I feel in love with those beautiful eyes. Now I see those eyes. Her eyes are simply blank now. And a part of me is blank.
Diane is simple person. She loves the simple things of life. She is delighted decorating her house for the season or the holiday. Having been an elementry school teacher, much of her life's fulfillment came from her love of children, teaching and interacting with them. She was a wonderful and caring teacher. Having developed MS in 1991 and leaving full time teaching, she was able to do some substitute teaching. She was often requested by her peers to come and cover for their classes. Kids she had taught would come up to Diane in stores and thank her. "You are Mrs. Clark, my 4th grade teacher" She always looked out for the 'underdog' child and gave them special attention and encouragement.
Diane is special. She loved her family. Her grand kids was her focus along with keeping her husband thinking straight. (Read the Nov. 1 Sunday post about Granny.) Her MS is a great trial to her. There have been times (exacerbations) when she had to crawl to the bathroom. Lately, she has developed slurred speech and hand/arm tremors. I have had to feed her at times because she would place food on her fork but flip it around the room when her hand would tremor.
Diane has endured alot. We often ask why? Especially now. Why must such a wonderful, simple, loving person have to enure more? Why.......
We, the family, are coping...kinda.
It is hard going to go to bed at night. Praying for Diane. Begging the Lord. Hoping. Wondering why. Shedding some tears. Crawling into bed. I am alone. I see her in her ICU room. I wonder why. I see her eyes. I am blank.

I must express much gratitude. Christy my daughter who started and has kept up this blog. We hope it has been helpful to all. It has helped me. Matt, thanks for helping and your support. Andy and Heidi, hang in there. Kathryn, thanks for watching Judge Judy with dad. Mom loved the judge.
Nancy, Dave Matt, Reed, spouses and family - thank you for your many visits, prayers and concern. And thanks to all of YOU from the Clark's for your expressions of love and concern and especially for your prayers.
And then there is our family angel Vickie Linton. Diane's long time very best friend and confidant in the world. Vickie, thank you, thank you. I know how much you have helped Christy, Andy, Kathryn and me understand all this better and get through this a little bit easier. You have been our light. You have made it easier to endure. You are our angel.
Again, thank you all.. neighbors, friends, ward members, family, my Facebook and business associates, for your love and prayers. We are indebted to each of you for your personal pleaing to the Lord in Diane's behalf. We have faith because of you. God bless you all. Lane

Neurology at it's finest

Can I say I was not all too impressed with the less than stellar answers I received from the neurologist today? I'm sorry but I can plainly say that long pauses and breathy answers are not sources of comfort to any person with concern. My conversation consisted of me trying to pry information from him. He told me ,"these are all really great questions but unfortunately I don't have any great answers." Hmmm...I think this is a theme, one that I'm not all too intersted in pursuing. It is concerning that we haven't seen improvments mentally. The theory is that if we have marked improvements physically that the metal state will follow suit.

Antibiotic changes were once again made yesterday. White blood cell count is down today coming in at about 23,000 and no fever. All great things. I felt like yesterday her eyes might have been tracking a little. I'm sure the nurses and staff who could see in thought I was nuts because I kept going from side to side of her bed. I wanted to see if she would follow my voice and turn her head when I spoke. I'd like to believe that she was following me. Today her eyes weren't too wide. I think she was tired. They were really working her on the ventilator and she was exhausted. Tonight she will have a break. A little time to regain some strength will be good.

She once again had a priesthood blessing this evening. I am so grateful to the bishop and stake president for their placement of power on her behalf. I feel very strongly that prayers, fasting and faith is not lacking, thank you for that. I feel strengthened, I think we all need that to carry on. We know that everything that we are experiencing is part of the Lord's plan and we all knew it wouldn't be easy.

Life is fragile. For as often as that phrase is used you'd think we'd believe it. It's amazing how easy it is to take life, family and the simples blessings that are afforded each of us for granted. It's not until you experience something so life altering that you really stop to think. It's the precious moments of life that we remember, the simple joys. I examine my own life now. You just don't know how permanent anything is. I think of all that is mine and how blessed I have been to know love and happiness in it's truest form.

The window to her soul

Visits to mom are difficult, it's the kind of pain you never want to feel. Last night there hadn't been much change. The EEG came back, no significant events have taken place to explain what is happening. The nurse, whom I really didn't care for told us the neurologist is hopeful for her to come back. He couldn't explain to me what that even really means.

She has been sedated through a good portion of her time in the ICU but now she is awake...wide awake. It's harder to see her now. We can see in to her eyes but she's not able to see us. I stood over her looking in to her eyes talking to her, hoping that she would see me, recognize me and want to come back. I just keep telling her how much she has to live for in hopes of convincing her, as if it were only her choice and that she'd be better off here with us. I give her promises that we'll take care of her and that we don't want to be without her, trying to pull her back to us. It seems that Heavenly Father is pulling harder.

It's hard today to feel what to prepare for. There is so much unknown and so much heartache as we already feel a loss of what we once had. We know things will never be the same. We take the greatest comfort in knowing that our Savior is mindful of us and the pain we feel. I have to believe that he feels very much the same way that we do now. He is always there waiting for us with open arms and the help we need and he is always willing to give it. It is up to us to be able to recognize him despite everything else. It's really something to know that there is a love even deeper for each of us than the love we feel for our mom.

A tribute to Granny

November 1st

Diane Dixon Clark is not only our loving and devoted mother she is Granny to our children. Our sweet sweet Granny. Many women avoid the name of Granny and choose something more flattering, trendy or current..... but not our mom. She wears that title with pride. It is a long standing maternal tradition. My mom's mom is Granny to us and her mom was Granny to my mom. My boys defend this endearment with pride. Once, Jackson who was 3 at the time was asked if he was having a good time with Grandma. He looked at this women with sternness and quickly responded, "This is not my grandma, she is my Granny". We love our Granny.

Mom is the type of women that has always related to the little ones. She always knows what they like best because those are the same things that she likes. Spending time with Granny is a treat because it more than likely involves treats that come by way of a tea party or out of her candy jar. She is often found sitting around the child size table serving up orange soda out of the plastic teapot with a hearty meal of fruit snacks, granola bars, and crackers. My boys are in heaven. She can build train tracks like no one else can, is always up for a round of bedbugs and loves to help them with projects and crafts that are sure to be treasures to look at on their nightstands for months to come. She is loved and irreplaceable to these little boys who so affectionately refer to her as their sweet sweet Granny. She is soon to be Granny to 5 boys as we anticipate the arrival of Andy and Heidi's newest.

Granny can't always make her body do what she wants it to, but she has always done what she could and we love her even more for it. She always was interested in what the latest funny thing the kids had to say was so that she could tell a good story to the nurses who treated her. We have had some good laughs. Laughing and enjoying life with the family is what brings her the greatest joy in life. She takes great pride in her children and grandchildren. She always knew deep down that this was the greatest and most important wealth that this life has to offer.

We have been blessed forever more to call this wonderful woman mom and for our children to know happiness as a result of a Granny who loves them endlessly. I love her, respect her and treasure all that she has instilled in me as a wife and mother myself.

The focus of our fast

October 31st

Mom's body is continuing to heal. Her white blood cell count is down once again, right around 23,000. Everything in this reguard continues to move forward positively. My greatest concern today and for the past few days as she has improved physically is for her mental state of being. She is not responsive and at this point she should be. She is no longer sedated and today she was wide awake but she isn't there. She needs to be able to follow commands and protect her airway. I talked with her dr. about having a neurologist come and test her brain function. We can be as patient as we need to be in her healing process as long as we know she is still here.

This is to be the main focus of our fasting and prayers over the next day or two. It wouldn't surprise me if she has just "checked out" temporarily as a coping mechanism but it is still of great concern to our family and the doctors at this point. This is a very pivitol point in her recovery. Please pray for her mental recovery as well as her physical. We need to know that it is our mom that is coming back to us. Everything she ever was is exactly what we want back.

The power of a single word

Friday October 30th

Over the past 12 days we have been overwhelmed with talking and with words....many I've never heard before until now. Different medications, names of bacteria, and types of procedures. One word that has been overused is quite simply the word "if". Our days have been full of "ifs". If mom survives this, if they can diagnose the problem, if she responds to medication, if the ventilator can come out, if her fever comes down, if her organs are functioning, if she can hear what we are saying, if she is comfortable, if her swelling will go down, if the inflammation in her lungs has improved, if she will ever be the same. The unknown is scarey. It's scarey for anyone.

Today I felt was a better day. Changes....small changes but we'll take anything we can get at this point. I'm hoping that 2 days counts as a "trend" because her white blood cell count was down again. They came in at about 26,000. We are waiting for some more results on tests and procedures done yesterday but something different came in today. An identity to one of these bacteria. What a blessing, prayers are being answered. They once again changed her antibiotics to attack this strain. I am hopeful that everyday will show the improvements of this change in medication. They also changed her ventilator to the C-Pap function for part of the day in which she initiates her own breaths. It's making her work but to know that they think her body is capable of the work is comforting. The doctor says all of these things show improvements. I have to remind myself that all of this will take baby steps.

Today the word was "when". When mom recovers, when they take the breathing tube out, when we talk with her again. The ICU nurse today says she usually has a little intuition or gut instinct when it comes to her patients. She looked at myself and mom's sister Nancy and said, "This one isn't done". Whether or not that ends up being the case I'll take it today. We need every good word we can get. The overall mood today is good, there has been change.

I wanted to express my love and appreciation to all of you. Many phone calls from family and friends have come my direction, thank you. I haven't returned a lot of them but only because my emotions get the best of me. This is an extremely difficult time for me and my family. Your support is so appreciated and it will be something that we will continue to depend on in the upcoming months.

Thank you also for putting mom's name on prayer rolls across the state of Utah and beyond. I know that the power of the Lord is what we depend on to pull us through these difficult times. The power of the priesthood has also been exercised, thank you to the worthy priesthood holders in my life and in behalf of mom.

We invite all of you who are able and willing to participate with us in a fast on Sunday November 1st. We are uniting as friends, family and ward members to exercise faith in the Lord's plan for healing and comfort at this critical time.

Thursday October 29th

Another day in the ICU. I sit and feel so much anguish with the situation that we have been so abruptly put in. I look around and see how many others are dealing with their own pain and loss. Different situations, different circumstances but we are all feeling and expressing the pain we feel with having loved ones fighting for their lives. Life feels so unfair right now.

Everyday we continue to face new challenges and many of the same. More tests continue to be run in hopes of finding the strain of bacteria that is infecting our sweet mom. Her white blood cell count was down today to 29,000. Still very high but less than yesterday. The doctors say that is only a clear indicator of improvement if it continues to be a trend over the next few days. Her fever has been down a little today which is wonderful. It just doesn't seem right to have a cold fan blowing on her when it is snowing outside.

Really this is a true test of patience and perseverance. We hope everyday for that glimmer of hope, a breakthrough so that we know that we have really passed the worst. There is really no way to know what challenges we will be presented with next. The only thing that I know for certain at this point is that no outcome to this situation is going to be easy. No matter what happens, it's going to be hard.

Wednesday October 28th

It's apparent to me today how much the way I feel is very dependant on the nurse that is with my mom on any particular day. We've had many. Today the doctor's didn't give me a whole lot to go on. They have all been wonderful and very diligent in speaking to me and answering my questions but much of what it happening is a question not only to us but to the doctors as well. Her white blood cell count is 37,000. Up again today. I find myself just in awe at how this could have even happened.

They have been culturing her blood, urine, and in her respiratory tract. Today the nurse pulled up her charts and it's clearly showing that she has a strep and staph infection. This is on top of everything that she came in with. These bacterial infections she has contracted since being in ICU. She is on broad spectrum antibiotics that should be able to treat these strains. We are praying that this is indeed the case. Hope is all we need. She is still sedated with the breathing tube. They want her to be comfortable while she continues to fight a good fight. We love you mom.

Tuesday October 27th

Quite simply tonight I am prayerful of miracles. Not a lot of change to report today. Progress is testing our patience. She is still battling infection and Acute Respiratory Distress Syndrome. Her lungs are full of inflammation and her white blood cell count remains high....too high. I know nothing more than she is in the lords hands and he loves her even more than we do.

Monday October 26th

Mom looks good today. She seemed positioned well and peaceful as they have continued to keep her sedated. It's going to be at least a few more days with the breathing tube but she was having some productive coughing. It was interesting to see her cough without making a single noise. The nurse and respitory therapist seem to be keeping her suctioned well and she has really been clearing out.

One thing that concerns me every time I see her is her lips. Today they looked the best they had so I was really pleased. Her nurse Jessi is really looking after her. I had her clean her teeth again although I know they do brush them, it made me feel better to see her do it again.

She is stable and that is comforting. The biggest hurdle that we seem to be facing is the infection that she has that has yet to be identified. Her white blood cell count is 30,000 where you and I that are healthy are about 10,000. They know there is infection plaguing her body but it isn't responding to the antibiotics that she has been receiving. As of this afternoon, they switched things up to some drugs that can aggressively attack more types of bacteria. We are praying tonight that when blood tests start coming in tomorrow that their is a noticeable change in her white blood cell count. I think at that point we would know that we have turned a corner and we are going to get this. I am so proud of my mom, I think how grateful we are everyday to know that she's ours..... forever. Thank you for your prayers and concern for our mom......Christy

Sunday's Report

I had a long talk with the Dr. last night. I am nodding and listening but after everything is explained I feel like I've missed everything. Being an advocate for someone in this situation I've decided is like being a "MSI" or medical scene investigator. The one thing I am inexcusably always lacking is my notebook. Processing the details of this is harder than I ever imagined. Hope is the only thing that we need to keep going. We have hope....mom is a fighter.

With every new day and every shift change brings new challenges. We are rehashing over the same things, looking for changes and learning that even doctor's don't know everything and in some cases they know nothing. We want nothing more than to know mom is being taken care of in the best way possible. We know she doesn't mean to any of the nurses or doctors what she does to us so that is why we are there...everyday. We know she is in good hands, but she's not in ours.

At this point they are baffled as to what is causing the continued infection in her body and the inflammation in her lungs. There is also concern for her heart. They are treating her with blood thinners to prevent clots and just looking endlessly for an explanation. We are praying today for them to find the cause or explanation so they can treat her. Her kidneys and liver have made improvements.....we are grateful.

The Story...one week later

Our hope is for this to be a log of our journey, a release of our thoughts and feelings and a way for those of you that love our mom to remain updated as to her condition.

Monday October 19th: My Dad calls to tell me that Mom is to be taken to the hospital as per her MS doctor via the emergency room to be admitted. He wants me to come and help to dress her and prepare her. When I arrived her condition had become such that we needed to call the ambulance to come. They arrived to find her oxygen and heart levels dangerously low. They loaded her in the ambulance and my Dad went as I followed in my car behind calling my brother, sister and close family to come as soon as they could. After arriving she started to become coherent and could talk to us. One of the first things she was concerned with was pistachio icecream. It made us smile during a time we needed comfort that she was still with us. They quickly determined by her symptoms that she was in Septic Shock. A serious condition that we knew little about. There was to be determined an underlying cause that put her body in shock that they were working to diagnose.
They immediately started her on antibiotics and other medications, it then was neccessary to sedate her and put in a breathing tube as she was admitted to the ICU. Mom received a blessing from Dad and Andy. We began our vigil.

Tuesday October 20th: The doctors have determined that she has a very serious double bacterial pneumonia....life threathening in and of itself. We had lots of family support today. Uncle Dave, my mom's closest brother flew in from Colorado in the morning to be with us. Nancy my mom's only sister stayed close and Vicki, our dearest and oldest family friend served as a great comfort as the doctor's optimistically gave us a 50% chance of recovery. A very trying and emotional day....a day that we all sought the comfort of the priesthood. (Thank you Uncle Dave).The heart looks good and the lungs are as well as can be expected considering that they are full of pneumonia. Concerns for other organs. She has had a blood transfusion by now to get rid of the all the bad blood that was in her system poisoning her organs. We pray for good reports from the Dr.

Wednesday October 21st: Things look to be showing improvements. The Dr gives us a hopeful 80% recovery. Her kidneys are doing better and her liver enzymes are lower. We all feel relief. She is still pretty drugged but is responding to us with head nods. Andy and I spent some time with her telling her how much we love her and how proud we are of her. She is a fighter! Andy tells her that it is no mistake that she is our mom....we chose her and wanted to be together as this family. A tear streams out of the corner of her eye. We know she's there and knows we are too. Andy asks her if she wants him to come and read to her, she shakes her head no. I tell her that we will come and just talk to her. She shakes her head no....too much talking I guess. She nods yes to us just being with her. Grandpa and Granny Dixon are here with us today. We are happy they can be with their daughter. It's hard for all of us to see her this way. We pleased with the progress.

Thursday October 22nd: Everyday we are hopeful that she can come completely out of sedation and have the breathing tube removed. Today is yet again not the day nor will tomorrow be. They are feeding her through a tube a low calorie diet. Digestion is the last thing that your body works on in a condition like this. We feel she will be the most comfortable with this regimine. We are still getting updates from the doctors daily. She continues to improve with organ function. They are concerned with these "spells" that she is having that increase her heart rate and affect her blood pressure. Noone can determine the cause.

Friday October 23rd: We are so happy when we learn her fever is down.... the infection is leaving her body and she has been breathing all on her own for nearly 8 hours. By the time I see her again in the evening she has had another spell in which they had to put her on 100% oxygen and her fever has spiked again. As she became stable they were able to wean her off again closer to 60%. Still showing overall improvement, just no understanding of the effect of the episodes on her heart. They go back and forth in telling us of a possible heart attack. At this point they refute that.

Saturday October 24th: It's official we are all baffled. The doctors have been doing a series of heart tests which are showing nothing. Everything is looking good, we are working on getting an understanding on what is happening with her heart. Three days with the spells and noone is able to determine the cause. This is our hurdle today. We are praying for the doctors to be able to have the inspiration and understanding of this condition and how to treat it.

Thank you for all of the support that you have offered our family. We appreciate the concern for our mom as well as us. Your prayers mean everything.