Saturday, November 28, 2009
Granny and Santa are planning something = Lane
Thursday, November 26, 2009
Giving Thanks this Thanksgiving Day - Lane
Wednesday, November 25, 2009
Her Trach and the Sound of Music
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.
Sunday, November 22, 2009
Diane DEMANDS Turkey and Dressing for Thanksgiving
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
Saturday, November 21, 2009
Wow, Diane is doing much better. == Lane
Tuesday, November 17, 2009
Miracles happen every day
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.
Monday, November 16, 2009
The Smile in Her Eyes
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.
Sunday, November 15, 2009
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
Thursday, November 12, 2009
Moving Forward
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.
Wednesday, November 11, 2009
Cough....and make it count!
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.
Tuesday, November 10, 2009
Mom and skinny jeans
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, November 9, 2009
MONDAY ICU UPDATE 5 PM - MORE IMPROVEMENT Lane
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
Sunday, November 8, 2009
A LITTLE MORE NEWS
Sunday Morning Nov. 8th, 2009 - Lane
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, November 7, 2009
Saturday: Morning 8:30 AM - Lane (Husband)
Friday, November 6, 2009
Eighteen Days - Feelings Expressed by Lane - Diane's Husband
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
Wednesday, November 4, 2009
Neurology at it's finest
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.
Tuesday, November 3, 2009
The window to her soul
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.
Sunday, November 1, 2009
A tribute to Granny
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.