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