Friday, July 31, 2009
I was talking to my friend Shelley and speaking of my dread for Nicole's birthday to come. I was affraid that she would die on her birthday. Shelley gave me a piece of peace. She said, " If she passes away today it will be like she is born twice on the same day". John and I sat there stunned. What joy that statement brought me. Even if it didn't happen on her birthday it would be a rebirth. What comfort.
Nicole started to relax and her breathing was not as labored. Her blood sat came up and her lips pinked up. Our prayer was answered.
When we came to the unit today she was resting peacefully. We were very excited to have our friends, Teresa and Tim, from Wichita, Kansas meet us at the unit today. They flew in for their annual vacation in Park City. It was really good to see and feel of their love for us. They brought a card and a blanket made by Sister Austin from Wichita. Thank you so much for the love you show us.
Our daily update on Nicole: she is spiking a fever again. She has had a fever for 2 days. Now she has a bacteria in her lungs (not pneumonia) and a bladder infection. So many things to fight. Her stats from last night are more stable. She is on 3 more antibiotics.
Nicole's face is very red still and still healing but it is looking much better now that the scabs are diminishing and the swelling is nearly gone.
The alarm just went off on my phone reminding me that today was going to be Nicole's birthday party. She had invited her cousins and a few friends to go to Color Me Mine. It is a ceramics shop where you paint individual pieces. They then fire the piece for you and it is ready to pick up a few days later. Dinner next and a movie. Nicole had ordered her birthday cake from Dippedee's is Lehi. It was so cute. Maybe one day we will plan it again.
We have 2 23 year olds now, Christian turning 24 next month. And if you count Elisabeth (our German exchange student) we have 3 23 year olds. It is kinda fun to have kids the same age. Christian doesn't like it but Nicole loves it.
John is going home tomorrow. I am sad. I am lost. I will miss him more than you know. I know he will miss me. I know I am strong but I am stronger when we are together. We make a united front. We are a team. We can do anything together. Nothing can stop us. We are one.
Thursday, July 30, 2009
Happy Happy Birthday, Nicole dear. Happy days will come to you all year. If I had a wish then it would be, A Happy Happy Birthday to you from me!
You, my dear, are 23 today. You are missing your birthday celebration. We have brought balloons and a cake which we will blow the candles out on and make a wish for you. Our wish for you . PEACE. What more could anyone wish for. That is my wish for you, my sweet Nicole.
You have lived for 23 years. You have lived a life of love and struggle. You have had hardships and accomplishments. You have had sorrow and strength. You have smiled through many trials. You have had a brave face even when you are scared. You have lightened many lives around you. You have had many adventures. You have made many memories not only for your self but for those around you. You have made others smile. You have LIVED.
You, my dear, are loved.
Wednesday, July 29, 2009
When we came to the unit today Nicole was in wound care. The nurses that do that are so amazing. That is all they do all day. You would think that it would be a job nobody would want but they love it. I am glad they do because I know I couldn't do that day in and day out. It really takes amazing people to do that.
When they are done she has new gloves on. They are pressure gloves. They are to help with swelling. The bandages she had before were good but now that her hands a graphed and they are healing it is time for the pressure bandages. A good sign.
Nicole's BP is more stable today but still low. She is not running a fever today. Another good sign. She doesn't talk to me today. So much healing going on I guess she is just tuckered out.
23 years ago at this time I went into labor with Nicole. We had eaten dinner and I was bushed. I had just told John I wasn't sure I could do this labor thing again. Nicole was already 24 days late. The doctor had just told us the day before if I didn't go into labor in the next 48 hours he would induce me. Well, I guess we get to do this the regular way. My labor begins. We took Christian to my parents home only 3 blocks away. Off we go.
The hospital is only a 10 minute drive but it feels like 45. My labor was kind of irregular when I got there and they wanted me to go home. "NOT ON YOUR LIFE! I have come to have this baby and you can't send me home." I asked for a jacuzzi tub to sit in for a while. I knew that would relax me and get the show on the road. Well.....after 3 hours it did. My water finally broke. Labor ensued.
So many thoughts going on inside my head. I remember it like it was yesterday. Will I be a good mom to 2 kids. Will our kids be great friends. Will I ever get any sleep. Will I ever get though this night. Will I ....Will I... Will I.... SO many thoughts.
My regular doctor was out of town and we had to have the on call doctor. He wasn't my favorite person. I think he is too hasty. My thoughts are right on. He didn't really want to wait for Nicole to take her time in coming so he forecept her, cord around her neck, strangling her. We hear him say, "oh no". That is not a good sign when the doctor says, "oh no". He realizes too late. Nicole has to be whisked the the NICU and resuscitated. Off John goes with his precious cargo. Not letting her out of his sight. A few hours later John returns to give me the details of what is happening. Thank goodness for a great pediatrician. He got her on track.
Several hours later I was able to hold her for the first time. She was so small. 5 lbs, 18 inches long. Born at 4:29am July 30, 1986. We named her Nicole Elish Carlston. I can't believe she will be 23 tomorrow.
She was all worth the wait. So tiny yet so large in spirit. I love to hold her. Christian couldn't say Nicole so he called her Coe. That stuck for a year or so then he started calling her Sissy. She has many nicknames.....Coe, Sissy, Doer, Skinner, Sister do, Nikki, Nicola. All names of love. All names that I say to her now to see if she responds to any of them. Besides Nicole she responds to Niki Nikki Timbo. Of course she does, because that is her special name. I remember the book that name comes out of........
LONG NAME NO CAN SAY
It is about a Chinese boy who is born like 9th after 8 girls. His mother names him Nikki Nikki Timbo No So Rimbo Oooh Miuo Muchi, Gumma Gumma Guchi because she wanted him to have the best name. ( the longer the name the better) Very cute story.
I have been blessed to have her in my life these 23 years. Thank you Heavenly Father for giving her to me. I'm doing my best.
Tuesday, July 28, 2009
Nicole had quite a busy day for visiting. Sandra came for a visit. She said she had a great one. We are sorry we missed her this morning. We haven't seen her for a while, it would have been so good to catch up.
Ashley came tonight. She actually sat in the waiting room for 3 hours finishing the birthday present she made for Nicole. Ashley knitted her a blanket that is cream and pink. It is so soft and cuddly. She also gave her a bear that is VERY soft. Something that Ashley and Nicole have been doing together for months is going to sushi on Tuesday nights in Provo. They both love sushi. Ashley made her a coupon for a sushi night when Nicole is better. She also made her many signs that are in Nicole's room. They are bright and smiley with glitter stickers on them. Many words of encouragement like "I am a child of God, I feel my Savior's love, Just believe, I am like a star shining brightly." All on bright yellow paper.
Monday, July 27, 2009
We were able to have some good eye contact this morning and talk to her about what was going to happen as well and some of our feelings. Nicole is such a fighter. The unit director came in today and told John and I that they are so amazed at how stable she has become and her slow progression. She indicated that about 50% of all patients burned over 50% die.
Off to surgery she goes. She is in great hands. While she is gone Zach Olsen stopped by to see how we were doing. He is one of the missionaries from our mission in KS. Super guy. I have to say the missionaries that came to serve in the Missouri, Independence mission are some of the finest anywhere. We love those guys. John's sister Anne also came with Beth and Tanner to check in and see how things are going. They came right at the right time. John and I were just leaving the unit for nourishment.
She is back now. The surgery went well. Each area the doctor wanted to addressed today did well. Nicole is mostly covered again so that will calm down the nerves that are exposed as well as help the tissue that is so sensitive to calm down. She is sleeping comfortably but has to be covered with several blankets to keep her warm again.
I just keep looking on the bright side of things.
1. I get to look into her eyes periodically and see them looking back at me.
2. I get to rub her head and feet each day.
3. I love to read to her.
4. I feel so many people far and near praying for her and our family.
5. I love the staff here and I love how they take care of Nicole.
6. I am grateful for the tender mercies the Lord show to us.
Nicole will be in and out now for a couple of days. But I know she is resting as well as she can. I know that even when I am not here she is taken care of well. I know we are being watched over. I am grateful.
Sunday, July 26, 2009
Last night after leaving the burn unit John and I went to Anne and Rich's home in Centerville. (John's Sister) We had barbequed hamburgers, fresh grilled squashes, watermelon and fresh lemonaide. It was all delicious. But the best part was dessert. Burnt a lmond fudge ice-cream. My personal favorite. It was home-made and awesome. Thanks for having us over. We had a great talk.
John's nephews wanted to take us up a canyon in Centerville to see a waterfall. We drove part way and thenhiked the rest. Me in my flip-flops and it was getting dark. Not so bad that we couldn't see though. It was so beautiful. Both nephews that took us there proposed to their prospective wives at this waterfall. So nice to see where it all happened. They are all so cute. We feel very blessed to be part of this family. I was telling John on our way back from the water fall that if anything happened to him I hope I was still invited to be part of this family. He laughed.
Here we are at the burn unit again. To our surprise Dr. Cochran wants Nicole to go out in the sunshine, for sunshine therapy. We are elated. After dressing changes Nicole is put in the cardiac chair. PT comes in and does their thing and then after that we are off. It is like a breath of fresh air to actually go on a walk with her. Well, we are walking and she is being wheeled by her aide Edson (from Bolivia). She is back on oxygen and she is strapped in so she can sit up straight but that is okay. The hospital has a small garden area that we sat in for a while. It was so bright out I put my sunglasses on Nicole. She was stylin'.
We were so happy to have her out in the sunshine. She even mustard a slight smile. Edson was making funny sounds and she smiled at one of them. Even though we were only out for 20 minutes she was extremely tired when we came back and she was in a lot of pain. She was a trooper. Her face is looking great. most of the burn on her face has healed. Her chin will need to be graphed. From her collar bone down is also going to be one big graph.
One of the families in the burn units dad passed away today. Just before we went for our walk. We have been praying for the family for 2 weeks. He came in with only 20 percent burns. Mostly on his legs and feet. The family comes from Buehl, ID. We got pretty close to them. They are a large Mennonite family 10 boys and 3 girls. One of the wives was from Inman, KS. It was so nice to get to know them. We pray for them in their time of sorrow. It all hits home so close when that happens.
What do YOU do when life gets so hard. I gain strength from the many trials we have endured. I look back on those times and sometimes I even laugh that we had to go through that. Do you go back and think of the lessons you have learned? I believe my biggest lesson learned is patience. They say don't pray for patience or you will get many opportunities to learn it. Well I didn't have to pray for it but I sure got the lesson. I feel I have learned that one well. I challenge you to look back on a lessons learned. Look at how it has affected your life and made you stronger.
Nicole is having surgery tomorrow again. No graphing but cutting more bad skin off and laying down cadaver skin. If they can cover all the exposed area she will be in less pain. As long as there are areas that are not covered, those areas are extremely sensitive and cause extreme pain. Nicole's donor sites are not ready to be harvested yet but we are hoping that in about 1 more week she will be ready for that.
Nicole's stats are erratic this afternoon and evening. BP very low again and pulse very high. I hope that all gets regulated by morning.
We are going home now to rest up for tomorrow's surgery day. At the hospital early.
Saturday, July 25, 2009
When we arrive at the hospital Nicole is already in the cardiac chair. She has also been on the tilt table for 4 minutes. Our report from the hospital was good today. They took out Nicole's ART line today. They also removed her NG tube. All good signs.
Her nurse today is Shaun. He is awesome. Always so thorough. Makes sure he answers all of our questions. He said the night nurse, Hailey, reported to him that she had a really good night. She was sure it was because of the blessing John gave her. God is good.
Her PT girl came in and moved her limbs for about an hour and then John worked with her arms some more and got her right fingers to her forehead.
John had a talk with her nurse today regarding Nicole's desire to go to Heavenly Father. The hospital has provisions for Nicole's requests. He noted it and they will have the social worker review it with her doctors and Nicole. They want to make sure they are doing what the patient wants. The nurse told John that he has seen patients doing so well. Getting better, making strides and then one day it all turns. Maybe I should change this blog name to be......"Our Journey" instead.
The journey is difficult in all aspects of life. Not just what we are going through at this time but in all we do. Have you ever heard the saying, "I never said it was going to be easy, I only said it would be worth it." I have thought a lot about that recently. I know what we go through, the trials, the learning even the happy times makes us who we are and what we are becoming.
We ask God to bless those around us that in their trials they will know it is worth it.
As we are spending time with Nicole today we can tell that more than anything she wishes she could talk. She tries so hard to mouth words that we don't understand. She tries to be patients with those around who are guessing at what she is saying. Her ears are very sensitive to sound at this time so any extra noise really bothers her. She doesn't want me in the room right now. Apparently when I talk to try to guess what she is saying it hurts her ears. I am heart broken. All she wants is her dad.
Nicole is in a cardiac chair again today. We are so proud of her. She just sleeps but it is an ordeal to get her in the chair. The pain of moving her is practically unbearable. When she gets to the chair she can be left alone to slumber.
Our sweet girls two favorite holidays, July 4th and July 24th ( because of the fireworks) are both forever changed. John and I thought we would be able to see the fireworks tonight. We wanted to watch them for Nicole so we could tell her about them. That didn't happen. So much going on at that time of the evening that we didn't want to leave her.
When I come back into the room from being booted out earlier, Nicole smiles at me and mouths, "I love you". She squeezes her eyes together in a tight "hug". That is how we hug from across the room. Totally made my night.
John gave her a fathers blessing tonight. It was very comforting to me. I hope it was to her also. During the blessing her eyes were open. not only were they open but they were very wide. Like she was trying really hard to listen to all that was being said. She was blessed with comfort and should she choose to stay in this life that her cells would be healed and she would have the strength to carry on. She was also blessed that she would be able to tell her story to others and it would be a source of strength to them.
When John is finished Nicole is crying. She mouths that she wants to go home. When I ask her which home she mouths, "to live with Heavenly Father". I am beyond words. I know this is a distinct possibility yet I am so full of emotion I have to leave the room. I am so glad John is here to ease my burden. I hope I am easing his as well.
I can't come back into the room for 30 minutes. I need that time to recover. Maybe it was just my time to break down. I just don't know what will happen. I wish I did. The journey would be much simpler. I just want simple for once. As we get ready to leave I ask the nurse, "What if something happens and I am not here?" Her reply: "We will call you right away and do what we can for her." I am comforted that I will be called right away.
Friday, July 24, 2009
The parade route takes the floats to Liberty Park. That park is so fun. It has a lake that you can use paddle boats on. It also has a large play area. I don't know how many kids can fit in there but there is usually so many kids there it looks like a zoo but they all have so much fun. There is a Farris wheel, a merry-go-round with hand painted horses and electric swings.
A big party at the park after the parade is fun for most people. There are booths and food. The park party runs all day and then at night there are fireworks. I have always thought Liberty Park fireworks are the best.
Christian went to the parade this morning with friends. He has never been to that parade before. John and I are going to watch the fireworks from the hospital grounds tonight. We will take a blanket and sit outside. It won't be the same with out the kids but I am sure we will enjoy it.
Nicole is lying on the stainless table covered by visqueen. There are several nozzles hanging down from the ceiling which are used to spray her with warm water during the washing period. The wound care nurses start cutting off all the dressings. Nicole is flinching in pain but their soothing voices quiet her.
Once they get all the dressing off they start scrubbing her with soap and warm water. It is very painful. They give her another 50 mics of phentynal. My thought is, "if I had that much I would be out like a light". As they continue cleaning her, her skin or the homograph comes off in areas. They make sure that all the loose areas are completely taken off. Cutting places away so it is not loose. It reminds me of raw hamburger. It is all I can do to keep my mind on the tasks at hand.
Nicole's nurse asks me if I want to wash her hair. Oh my gosh, I was thrilled. I choose passion fruit smelling shampoo and conditioner. Nicole would have chosen that. I am actually not washing her hair but her scalp. She has been shaved. It has grown a little bit though. As I rub the shampoo into her scalp it is actually soothing to me to be able to touch her like this. I massage each area. A few areas have scabs that come off easily. Wash, Rinse, Repeat. Then I use the conditioner. It smells so good. I bet if this ritual was not so painful it would feel good.
Nearly all done with the washing and again they need to give her another 50 mics of phentynal. Total, 150 mics. That is a lot. It cuts the pain but Nicole still feels everything. I can't imagine the pain she is in. She is such a trooper. She lets them do what they need to knowing she doesn't really have a choice but not squirming around so they can't do their job either.
When they are finished they start to wrap her, toes to neck with silver and black material. It looks kind of like silver lamay. On top of that what wrap kerlix laying on red tubing so they can get her bandages wet though out the day. Next comes the ace bandages to hold it all together.
Instead of putting her back into her bed they strap her in the cardiac chair. She doesn't really know what is happening. So docile she is. The chair is reclined just like a recliner but her feet are down like she is sitting. This will help her breathing but it will also help her bone density. We don't want her loose that. John and I need to go home for a while but will return tonight.
With so much stuff that needs to be rearranged at our home to make room for Christian and to make it easier for Nicole to be cared for when she comes home, John and I took 3 hours to get that job done. Well at least some of that job done. Moving bedroom furniture, closets, supplies. It takes much more time than we realize.
It is 9:30 pm before we get done and can go back to the hospital. Nicole is sleeping peacefully. We speak soothing words to her. I hope she hears them. I can still smell the passion fruit shampoo as I get close the her head to kiss her.
A surprise was waiting near Nicole's bed tonight. Brad and Jenn Mauss had been to the hospital and brought us some treats to keep us busy while we are at the hospital these many hours. As a great note to boost our spirits. Even though we didn't get to see them we are grateful for them thinking of us. Right away I opened red vines and ate 2. I love those. Thank you so much for thinking of us.
Moving all Nicole's stuff into our room and moving our stuff around I felt like a guest in my own room.
Upstairs Christian has moved in and taken over the upstairs.
Selling the Wichita house to downsize and pay off taxes that were not paid while using the funds for Nicole and paying bills to climb out of debt.
I had weird feeling of being displaced in every place but in my two clinics. It was unnerving and I had to sit and think about it. Then on the way to go to the hospital to snap out of it I had to exercise gratitude.
I was grateful to a neighbor who mowed my lawn.
I was grateful to see Nicole and that she was there when I came from Wichita.
I was grateful we had gotten our bedroom and closet arranged the way it needed to be for all concerned.
I was grateful to celebrate Christians Birthday early so I could be here.
I was grateful that Christian had moved home to help and us to help him.
I was grateful for the delicious dinner brought over.
I was grateful for the patients that had come today
I was grateful I had replaced my thoughts being played in my head. I liked this collection of stories better.
Thursday, July 23, 2009
I am inspired by her fight, and grit, her eyes when open can speak volumes. She tries to mouth words but because of a tracheotomy the air does not move through her vocal cords to help her say words you can hear. She does her best and displays only occasionally a modest level of frustration. Considering all her challenges prior to this and now this event you would easily understand if she would give up and say I'm done. She still shows fight. The fight that is the Nicole I know. I am so grateful to her to bear the pain. Thursday last week when I was in Wichita she mouthed the words to Angi "I want to go home." Angi said that is not possible we could not possibly give her the intensive care that she needs right now. She replied mouthing the words again "You told we I could go home if I wanted" and she meant this time to her Heavenly home. Angi said yes I did and it would be OK but lets call dad. They called and between patients I stepped out to receive the call.
Angi rehearsed what was said. I asked that the phone be placed next to Nicole's ear.
My comments included she has had pain most her life and that if she wanted to go that would be allright but I wanted to tell her I loved her and kiss her and give her a hug good bye and just see her face to face before she went home. Angi said She was nodding her head. She wanted that too. I said Nicole I might be asking too much but could you wait till I could get there. She nodded yes. I wanted to leave and catch the next flight but I had a peace come over me to wait till Sunday when Angi was flying in from Salt Lake City to Kansas City where I was going to a Dr. John Brimhall seminar to see him speak following losing his wife to Cancer and having remarried. I was to stay with my brother and his family and they really needed us for a challenge they are passing through. We drove from KC to SLC with a detour through Wichita to pick up all my equipment to take to my clinic in Lehi, Utah, for the one week a month I practice there after a three week rotation in Wichita.
Angi and I couldn't wait to get back bedside with Nicole. When I saw her I was so glad to see so much of the swelling down and see the contours of her face. She acknowledged me immediately and opened her eyes when I called her by our special name-Nikki Nikki Timbo. I repeated the rest of the name too. She had a difficult time going in and out of a semi awareness. We stayed several hours Monday after scheduled patients. We had driven 16 hours and had 2 hours to prepare for patients and then went to see her. We have spent half days at the hospital
It is now Thursday. I am somewhat encouraged by her progress. She still is given a 50/50 shot.
We were permitted to watch Nicole have debridement(washed and scrubbed and loose skin removed along with scabs that had loosened) and her dressings changed.
I am so impressed with the compassion of those that attend to her. They talk to her and are gentle as possible with her. I wish that all medical attention received by anyone was of this nature.
The totality of her burns were rough to witness. The full impact of 60% of her body having been burned with 80% of it third degree and deeper was visually overwhelming if you focused on just that. Her flesh had the appearance of raw hamburger. She was totally at the mercy of their care. We had to gown up, place face masks, hairnets, and gloves on. She was lifted while in a hammock type bag fully lying down and placed on a table prepared with her new dressings. These new dressings were covered by plastic to allow the multiple water type hoses when used to drain from this slanted table into a drain while her several layers of dressings were cut off and removed. She was then thoroughly washed. The old dressings rolled up like a bed roll under her and she was rolled to allow it to be completely removed. The plastic layer beneath was than cut and she was rolled/rocked onto the fully prepared layers of new wrapping. A silver impregnated layer of aluminum type wrap was put on than tubing palced on that allows water to be pumped over it and the silver to leach out and protect the open wound from bacterial infection. Gaze was wrapped over that and than specially prepared gaze with an A & D type ointment was used to wrap each finger so as not to adhere to the skin. This was so that when these daily washings were performed and the bandaging removed skin would be minimally adhered to it and not tear it off her when removed. A thick layer of this gaze was applied and finally Ace bandaging was wrapped over her arms and legs. Today a gown was placed over that.
Vital organs are functioning. She did not need an artificial vent to assist her breathing today. This is good because artificial respiration leaves a patient open to lung infections. This is a good sign of progress.
One of the three attending MD's came in and assessed her. We spoke. Typically for each 1% of the body burned you stay 1 day in the hospital in intensive care. Its day 20 and she has 40 to go but with third degree burns over 60% of the body we were told it may be more and still she has wound rehab for 60 days. We were told don't be surprised if she is in intensive care so 90 days.
We moved Nicole's bed into our bedroom and rearranged things preparing for her to come home. Christian has been so helpful and he moved from the house he was in into the home to help too.
We read to Nicole all that had been written in her guest book to her by those who have visited her in the hospital. We were choked up many times as we read the precious words of love written to her. We were again deeply touched by the influence this daughter of ours and of Heavenly Fathers has had upon so many.
Tonight as we kissed her goodnight I felt an impression that God was happy with us.
It meant a lot.
Wednesday, July 22, 2009
Most all the time she is in dream land. Sleeping the worries away. I just love to see her sleep. Many memories each day come to my mind. Sometimes it is a flit of a memory, sometimes it is lengthy. Many, many nights I layed by both Christian and Nicole and rubbed their heads to soothe them or help them get to sleep. To this day they love to have their heads rubbed.
Nicole has physical therapy in bed for an hour. She responded well to about half of the commands. Respiratory also came to again try the voice button. Not much luck but one day they will get it right. We appreciate all they do for her each day. You cannot imagine all the people that come in contact with Nicole each day.
Last night John and I were talking to Nicole's nurse about how great we think the staff is. He said that there are so many people who want to work on this unit. They are beating down the doors to get in. There is so much comradery, caring, love and kindness amongst the whole staff. I think it would be a hard unit to work in but you can tell they love it. I am in awe of them.
Angi's parents have been to the hospital nearly everyday. Mostly they just come to see her for a few minutes. An update is not good enough for them. John's mom came from Koosharem today and said she was going to see her tonight. She hasn't seen Nicole since July 5th. Nicole will look so differant. More like herself.
Tonight we celebrate Christian's birthday so John can be here. We always let the birthday person choose their favorite place to eat.
Christian chose Carraba's! Yummo. I love that place. I always have the same thing...Chicken Parmesan with half garlic mashed potatoes and half spaghetti. There is so much food that I can take half home. Now that is the best part. Leftovers. Christian gets Chicken Parm also with fettuccini and John, the Sirloin Marsala. We are such creatures of habit. The waiter brought out some ice cream that tasted like custard. It was good but not as good as Sub-Zero. Sub-Zero Rocks. Rachel and Aaron own the one in Pleasant Grove. It si so fun to have ice cream there and watch them make it right before your eyes. my favorite used to be mint ice cream with Jr. Mints. Now it is cinnamon ice cream with cookie dough. So good. Thanks Rachel and Aaron for letting us in after closing to be able to get recharged. Thanks too for the words of comfort.
Trying to juggle two worlds is hard. I don't know how Hannah Montana does it. (Nicole loves that show). We have the after the fire world. The world where I would like to stay in with Nicole. I want to be there every second to make sure she is feeling all the love I have for her. The world where, when I am in the room it seems to stop for a while.
Then we have the other world. The one that I can't ignore. The one that has to be addressed. You know the one...The bills need to get paid, I need to eat and sleep, our clinic has questions or needs answers, I want to spend time with Christian, talk on the phone with John, I need clean clothes, the dishes need to be done and the yard needs care.
I need to figure out how to juggle better. I have been so good at it in the past but right now I don't think it is working as well as I want it to. I have too many hats right now. I need a hat rack. That what I will do...look for a new hat rack.
Grateful for my husband, John. What an amazing guy he is. Most people have no clue. He would do anything for anyone. He is kind and generous, loving and giving, smart yet thoughtful. I could go on and on. I am so lucky to be married to him. There are not too many people who, if there spouse or child was sick and the doctors couldn't figure it, would go through school again to become a doctor so they could figure it out. He loves me so much he did that for me so he could figure out how to make me well. And along the way he has helped so many other people. And now they are the lucky recipients of his care.
Grateful for our son, Christian. Christian is equally amazing. He has grown into an awesome man. He has many qualities that his dad has. He would take the shirt off his back for someone. Many times the past 2 winters in Utah he has stopped and dug people out of snow drifts or pulled them out of ditches. Until this event with Nicole, Christian would come by our home after he got off work each night to check on Nicole. Most nights she was already in bed because he gets off so late. Most nights she didn't even know he was there.
Grateful to Nicole's ward in Utah. They are awesome. They have really been there for her and loved her despite things she is going through. They have shown her Christ like love and acceptance. Involved her in Relief Society and other things. Nicole loves kids as you may know. Some Sundays, it was reported to us, Nicole would sit by families that might need an extra set of hands during Sacrament meetings. I am sure she loved that.
Grateful to our families. Grateful for the visits, calls, words of encouragement, flowers (even though they cannot go on the unit), cards, stuffed animals, posters, letters and food. Angi's mom even pitted 18 pounds of cherries that Nicole had purchased the day before the fire. What love we feel from everyone.
Grateful to our extended families. We are grateful for all the prayers uttered on our behalf, temple names submissions, dinner invitations, sleep over invitations and visits.
Grateful to our Wichita ward. For all the emails and blog comments, for helping John go through things to get ready for our house to go on the market. (Yes we are selling our home, no John is not moving to Utah.) For the service that has been rendered to him, the prayers, the hugs, the listening ears. I really appreciate it because I am not there to help him through this.
Grateful to our friends in Utah, Kansas, Texas, California, Minnesota, New York, Florida, Missouri,Tennessee, Arizona. For caring, keeping our spirits up, knowing when to be there and when to back off. For the lunch invitations, the movie dates and listening ears.
I am grateful for Nicole for whom I owe the learning of many lessons. I may not be the person I am today if it were not for the lessons I learned being her Mother. I have been told I have the patience of Job. I don't know about that but my patience grows each day. My faith grows each day also. My faith in God, my faith is those around me, my faith in human find. I believe the greatest thing Nicole has taught me is to love for all people. She has really been an example to me.
You all ROCK! Thank you from the bottom of our hearts.
These last 2 days John has been in town. Not only is he here to see and care for his daughter but his patients here also need care. I stay with John to help him with his patients. We see patients in the day and then go to the unit at night. Such a change for me after the previous two weeks. I feel frustrated because I only get a glimpse of her day through the eyes of others. The short time I am there is not satisfying.
I see her laying on her bed. The nurse has brought in a fan for Nicole. When she is awake she is hot. She is sleeping quietly. At night when we come she sleeps.
Nicole finally had her tubby today. They took her to the tanks room. She lays on a table and they use spray nozzles to wash her. She smelled so good. Don't you love it when your kids get out of the tubby and they smell so fresh and clean. My nose fills with sweet memories.
Nicole's lungs are very congested. She is being suctioned about 2 times an hour. She is coughing quite a bit these past several days. She doesn't have pneumonia but they are watching her close. The doctor decided to sit her up in a cardiac chair today. She is strapped in but it give her lungs a chance to clear more. It tires her out to be sitting up for so long.
Respiratory also came today to fit Nicole with a button that covers her trach. It will be used one day so it will block the air coming out through the trach so she will be able to talk. Her button doesn't fit too well so they will make her one special. It will be so good to hear her speak again.
Nicole's doctors have re-evaluated her next surgery date again. She will not have surgery this week at all. They will decide next week. Once she has it again she will be laying on her back so she won't be clearing her lungs as good. There are so many things to manage.
Nicole's room is so peaceful. It feels like the room is permeating with love. It is tangible. We feel she is attended by those from the other side. She is steadily progressing and we feel sure that there are those on the other side helping her in the decisions that are being made and in the repairing of her body. If Nicole makes it through this she will need a strong body and mind. The faith of those here on the earth and the help from those who have gone before us will make her strong. We know it helps us.
Since John has been here in Utah I have been sleeping better although now when I wake I could go back to sleep but there is no time. I hope when John leaves I find sleep easier.
Tuesday, July 21, 2009
You and I are fortunate to have Angi speak her inner thoughts through this blog. It is like a cathartic healing and we are witnessing another blessing embracing the challenge brought to us through Nicole.
Driving to Lehi Angi shared some thoughts and I felt prompted to start writing them down in my phone as she spoke.
I was in the very back passenger side seat that we lay down completely and convert into a bed. We can lay down completely stretched out by placing something under our feet. It is how we can do the driving we do and get the rest we need.
I asked her what do you mean "the quiet" and she began to explain and I began to write it down for her for me and those reading the blog.
"It is all the stuff in our lives that we do not talk about. Our struggles with the practice, Nicole, and other stuff. Its all the ancillary stuff around us that doesn't directly affect us that we push out and so our stuff is deafening.
Its the 20-50 phone calls a day from Nicole that if I don't answer sometimes very briefly will contribute to Nicole starting to spin her thoughts out of control and end up a serious tragedy that just a word here or there would have stopped that event from occurring and turning our lives upside down.
It is the doctor visits, the surgeons, the hospitals, the psychiatrists, the case workers and all the time and details that surrounds that.
It is Christian's reoccurring tumor. It is being away from Christian when I want to be there to hug him and help him with his challenges.
Proverbs 3:5 is what helps me hang together and is why I chosen that as a theme in my life. It is my favorite scripture, If I didn't have trust in God that he will help us even if we don't understand it I'd be lost. If I didn't trust God I'd be lost. I don't understand how I can help her but he does and someday I will. There are a lot of things we would have never have learned without her if sh had been as easy as Christian.
We have grown i patience, trust, and joy. We have grown to appreciate the little things. Had it been easy we would not have learned.
It would be nice to flip ahead in the Life Manual of Nicole's and ours to see how it all ends and works out. I love to skip to the end of a book I am reading to see how it ends and go back and read the whole book, but I want to know how it will turn out.
There is a picture of her I wish I had right now this second-She's five years old holding flowers she picked from the 'Road to the Sun' in Glacier Park and standing in the middle of the road when the road was closed and we had to wait for a large Crane to wind its way up the windy narrow road to pull the van out of the valley where it had landed some thousand of feet below the road.
Living with family not close has been both hard and easy. On one hand we have sheltered the family. They haven't seen the day to day goings on we deal with. On the other it has been difficult not to have them around.
We've lived moment to moment for so long we don't know another way. Thats why I have to plan ahead so far in advance because at any time our life can be turned upside down by something Nicole will do.
Having each other is how I can make it through everyday. When I can't hold on anymore I get strength from you to hold on and from you I know that even though its hard its OK we will get through it putting one step in front of the other taking one step at a time. When I am at the end of my rope, you say its OK and the rope gets longer."
My comment-I know she is there and she knows I am there and because of that we cling to each other and know together I can make it. But this faith and trust has come after many shattered windows to our life we have learned that step by step doing what we decide to do we will do the best we can to make it through whatever comes.
This strength was gained with a decision I made to live because the only honorable way to leave this life is to live it. This came after a couple of months of depression while in Chiropractic School following the discovery that I had bone cancer and was given only months to live. I began to live one minute at a time and appreciate I had time with my family, that turned into hours than days than weeks than months and now it has been 18 years. As the Apostle Paul wrote- I have run the race I have obtained the prize and I have kept the Faith. His further comments talk about enduring to the end no matter what comes. No other option is an honorable way to go. That was my conclusion that turned me away from the bottom of a scary place I had gotten too. This key decision has been one of my pillars of strength. It has been the wall when I am at the end of my rope when all aspects of my life are testing me beyond what I can bear. The next is having Angi as my wife. I know she has faith and when we are together we can make it.
Angi continued her comments "I don't always have peace with things and whether God answers our prayers or not he is still there. With all the running we have to do to make all that we are doing work, we just work together to do it."
M comment-Some people think we love driving with all the driving we do. Well, that doesn't explain it, what does is that is what we must do to do what we want and must do and that is the way through it.
Angi adds while continuing to explain 'the quiet'-"Few people really know us.
Many have made assumptions about our kids, rumors have been spread about us at church.
Even though Nicole was different she was an amazing kid, so is Christian. He treats girls so good and it has scared them off because they think it was a superficial show and not who he is.
His two year mission was us."
Let me explain that comment-When Christian went to turn in his papers to go on a two year proselyting mission away from home and paid for by him, the Stake President(a presiding clergy) gave us an usual response that at first was very puzzling and quite unexpected and not anything we had heard being done before, but as time passed became very evident the reason why. That is because it is usual and expected that our sons within our church take two years when they turn 19 years old and sometimes older and go on a volunteer mission for two years to a different state or country to preach the gospel and baptize converts and do so without pay. The stake president excused him from going on a mission and told him that his duty was to stay and help his family.
I shared a touching moment with many members who came up to me and hugged me. One particularly caught me off guard when he hugged me I unexpected broke down and his strength filled me with courage.
Comments that have been produced from our discussions were:
Events like this really knit us together.
We lay aside schedules, egos, walls of communication, and in this moment of high emotion we can be taught and brought to remembrance of our faith, our brotherhood and sisterhood, brotherly love, and charity.
The blog has been a real strength to me.
Thanks for doing the blog it has made me feel part of what you are going through.
We have had many occasions with Nicole that has shattered us into fragments.
This has occurred because of events we never would have chosen if we had the choice.
Many players in this game of life come together as hearts are softened, love is taught, and we grow together, and share our burdens, and lift each other up. This thought has been with me for many years since I read a story written by Elder John H Groberg. Elder John H Groberg wrote of a young child in one of the Polynesian Islands – an entire island was brought together in a cause to help this young girl. She died and the question was asked why, for what purpose did all this happen just to see her die.
We have learned and now we can stand strong not shattered as many expect to see us because of those experiences and because of the tremendous number of prayers that are being offered on our behalf. We feel strength and peace. Its easy to want to act wounded and say words that meet expectations not because you chose to but it is so easy to fall into and act in pain but at that time you feel lifted up when you feel like the pain of those wounds is gone and what you have is this peaceful comforted experience. I find a greater need to acknowledge the strength and peace I feel and give thanks for your prayers. The pain comes through when I see and or feel another persons pain who is comforting me and my emotions which are full and high. My eyes flood into tears and I become comforted and I believe you are too. Of course this doesn’t mean if you don’t cry with everyone they don’t have pain, it is just how one soul touches my soul at that moment
The purpose boiled down succinctly into few words (by a friend from Lehi)-
One individual called to comfort me. He tried to find me at church to tell me something he felt impressed to. He told me because he found strength in my thoughts and my beliefs and was ending the conversation after comforting me with experiences he had passed through, by saying call me if you need someone to talk to.
I replied I know I will get through this and if she lives we will get through it or if she dies she will be OK because she will be out of pain and she will no longer have reason to cry. She will be with her loved ones and our Loving Heavenly Father.. But, it would be nice to have the blueprint of how to go through this. Then he told me, "This is not your fault, do not blame yourself or ask what if and why me and do not make it personal. If you do your suffering will be far worse. She doesn’t comprehend it like you do. This is your tutorial to learn patience, for your growth. This didn’t happen for her. it happened for you. You and your wife will be better healers. It isn’t about you, what you have or have not done; it is what you need to learn from it. Please read D&C 123:17.
THE REAL QUESTION TO ASK YOURSELF IS TO PRAY AND ASK THE LORD-WHAT DO YOU WANT FROM ME?
A day or days passed and he called and asked if I had read that scripture. I hadn’t so he read it to me.
"Therefore, dearly beloved brethren, let us cheerfully do all things that lie in our power; and then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed."
Your comments, your hugs, your physical touch, your time taken from your busy schedules to lift our burden have greatly lifted our spirits.
Because of Prayer
I received a phone call that lead to some very renowned individuals taking time on their Sunday to talk to me from South Dakota, New York, and Toronto within a 70 minute period of time that want to work in a coordinated effort to help Nicole by providing new technology. It may be approved in time for Nicole. But if it is approved it may open the door for others in the Burn unit.
New York called to see how I was and said that all you have done now has prepared you for right now and now is the time you need to keep your mind sharp and healthy. You need to be strong and there are loved ones that need you to be strong.
Monday, July 20, 2009
At one point John was sleeping. I had many thoughts start flooding my mind. I wished I had a recorder to just talk into. Instead I fished my notebook out of my backpack and wrote a few short notes so I would remember. I guess I drifted a little, John woke up. He became my scribe. It was just like having a recorder only slower. Thanks John for staying up for over 2 hours writing my thoughts down. Not only that, when i was done he took over driving even though he only had 2 hours sleep.
We arrived in Lehi early afternoon. We unloaded the van, saw a few patients, went to Del Taco and then drove to the burn unit. I had been chomping at the bit all afternoon to get back up there to see Nicole. I am sure they were getting sick of me because I had called several times to get updates.
The biggest update was Nicole did not have surgery today. The doctor says she is not stable enough to have surgery again until maybe Thursday. One of the hardest things about this is one minute she is good, her vitals are stable and the next minute she is not. I don't get it.
This is why they call it the wait and see game. We'll wait and see how her blood pressure is. We'll wait and see how she tolerates this or that. We'll wait and see how the graphs take. I guess we will wait as long as we have to.
Today is the first day in 15 days that John has seen Nicole in person. He talks to her through the phone each day but to see him today right there with her was priceless. Of course he greets her with the usual..Nikki Nikki Timbo no so Rimbo. Nicole wiggled her forehead but didn't open her eyes. He talked to her gently right near her ear. She peeked open her eyes for just a second. Yes! John saw her eyes.
When John was finished I needed to be close to her again. I moved in with precision. Knowing just how to move the machines so as not to make her uncomfortable. I slide in and take up my position. I can reach her head with my lips and I can lay my head next to hers. I love this. I love laying close to her. To feel her warmth. I just want to breath her in.
I sing, "You are my Sunshine" and imagine her singing it with me.
Tonight her nurse is named Jesse. Big Jesse actually (even though he is shorter than me). He updated us thoroughly and took care of her while we were there. Nicole actually was off the vent a few more hours today. That is good news. I just love the nurses here.
Another life holding in the balance on the unit tonight. It is hard to see others suffering, not knowing if and when they will be able to take their loved one home. That is one of the best parts of having the gospel in my life. I don't have to wonder if I will get to take Nicole home. If I don't, God will. And if that happens I still get to be with her in the end. What better thing to have happen.
She had a few visitors.
Anne and Rich went to see her. Nicole seemed happy to see them. Reaching out her arms to them. Giving hugs with her eyes. The spoke with her and she in turn used her non verbal skills.
G-Ma and G-Pa Pinder also visited. She tried her best to communicate with them but with a tube down your throat it is not so easy. She was in quite a bit of pain when they were there so Nicole nurse needed to give her an extra dose of pain medication. It was reported when they left the nurse had to call them back because Nicole became very agitated. The nurse was hoping they could talk to Nicole and calm her down. It work. Within 10 minutes she was asleep.
Aunt Lisa also came from St. George and stayed for a while. This was her first visit to see Nicole. Nicole and her have a special bond.
Nicole does sleep most of the time still which it the best thing for her. It is kind of like a new baby. Their eyes are awake but not really focusing trying to find a familiar sight to focus on. then with in moments you look at them again and they are fast asleep.
The love and prayers that are attending us at this time is felt daily. We are feel blessed by the out pouring of love and compassion sent our direction. May God bless each of you that read our blog. May you feel of our love also.
Sunday, July 19, 2009
Upon arriving at the burn unit this morning Nicole has her eyes open and she is sucking on a small sponge. It helps to keep her mouth wet. Her eyes are open and when she sees me her eyes sparkle. WOW! SO good to see that. I go to her bedside and rub her head. I just want to gather her up in my arms and squeeze her tight.
Within minutes she is back asleep. She looks so peaceful yet so small and hurting.
Her nurses could not take Nicole for a tubby today after all. Her blood pressure was just too unstable. Back on the medication she went. Nicole's temp is down as long as she is on the antibiotic and Tylenol. I don't really like the Tylenol route but I know they have to do that. Nicole is doing the best she can right now. There are times when she is pretty stable and other times things just go haywire. It is a roller coaster.
I am so torn as to going back to Kansas to drive back with John. What if something happens while I am gone. What if she wakes up and wants me. What if...
The emotional turmoil is almost more than I can bear. Each day watching and waiting. I see signs that things are looking up and I turn my head and the whole thing changes.
As I say goodbye to her before I leave to go to the airport I take the time to breath her in. I move her vent over so I can get really close to the head of the bed so I can kiss her good bye. I lay my head next to hers and sing, "You are my sunshine". I tell her I am going to get daddy and we will be back in 36 hours. She nods her head. She is in great hands. Not just the nurses and doctors but God's.
Update from Phoenix airport. Nurses say she is awake again. Nodding to some questions. They also had her breathing on her own for 2 hours and her blood pressure didn't tank. All good news. John's sister Anne also went to see her. She reported she is awake and breathing on her own for 2 hours. Matching reports. I like that.
Friday, July 17, 2009
When I came in today her face looks so much better. It is healing quite nicely. I wish the rest of her was doing as well.
Nicole's fever is down some today from 103.5 to 102. The antibiotics are doing their job. Since starting the insulin drip yesterday her blood sugars are finally coming down. They are reading almost normal. Nicole is off the sedation today but because of her fevers she is weakened and is sleeping. Sleep is the best medicine. When I stand at her bedside and call out her name there is no response. Not even an eye flutter.
I tried to catch up emails today as well as other things. I feel like I should be able to get more accomplished each day but I fall short. It is a good thing there is always tomorrow. Speaking of tomorrow...I am seeing Nicole in the morning and then I am flying out to KS to meet up with John. We are driving back together on Sunday. It will be so good to see him and catch up. We have a lot of things to go over and with a 16 hour drive we should be able to get some things accomplished. I will post tomorrow an update before I go but more then likely there will be not post on Sunday.
The dentist finally came today to x-ray Nicole's front tooth that was knocked loose. Diagnosis....The tooth needs to be removed. So I am thinking in surgery on Monday they will extract it. NOOOO....They did it right there, bedside. TODAY! I held her hand and rubbed her head even though she didn't know what was going on. It was more for me than her I am sure. The dentist (a girl) asked if I wanted her tooth. Should it even be a question? I have all her teeth that have come out. This one will be put with the others. I wonder what the tooth fairy should bring. Something special because it had to be pulled instead of coming out on its own. Think....Think....Think....
Tomorrow they will take her to the tubby room. They actually give patients tubby's. Not really in a tub but they put them on a special table. The bandages come off and they carefully cleanse all the wounds with real water running over her and real liquid soap. I choose for her to have passion raspberry with the same for her shampoo. She will smell so good. Even if she doesn't really know what is going on I will and I know she likes to feel clean.
It is crazy all the emotions a person goes through. Shock, fear, sadness, anger, denial, frustration, sadness and more. We even feel those emotions more than once. Sometimes I feel like I am just going through the motions.
Wake up, say my prayer, get dressed, fix my shake, get ready, drive to the hospital, get an update, gown up, stand by Nicole's beside and talk to her, sit down and read, catch up on emails, blog, write letters, talk to her some more, eat lunch, take a walk, look at facebook (and be mad because my page still isn't up) talk to the clinic in KS, study, talk some more, go home, say my prayer and go to bed. And while this is all going on I want every update, know everything they are giving her and why, look at all the stat numbers and follow her progress. I suction her, clean her trach, brush her teeth, swab her mouth, put aquaphor on her lips, rub her toes and head.
Same thing, different day, nothing ever changes. Sometimes I feel like a robot. I don't have time to really process it all. There is too much work to be done.
It is getting to be RANCH TIME! Ranch time is an every other year event. A big family reunion in Antimony, UT at the Rockin' R Ranch. The reunion is something our family looks so foreword to each two years. There is some 150 to 200 people that come. Playing with cousins, eating snow cones and cotton candy, riding horses, watching skits, lawn games, singing by the fire. Who could ask for more than that. Our Carlston family is in charge of the festivities this year. Nicole has never missed a year. She has a cousin also named Nicole. Each year we take a picture of the two together for them and also to see how each has changed. I will miss her this year.
Today is the day Christian is moving into our Lehi home. He choose to move in so our home does not look like someone doesn't live there. Also to help me out if Nicole comes home. So thoughtful. I love him. He is a gift from God. So level headed. A calming influence. I pray for him each day to help him understand why? To be comforted. Please pray for him.
When John was going to Chiropractic school Christian took over as "man of the house". John was gone many hours a day for school studying and clinic. Christian helped Nicole with her homework, walked her home from school, helped her with her chores, etc. He watched out for me also. One day John went into clinic on a Saturday. He kissed me good-bye and was off for the day. A while later I realized I was ill. i couldn't get out of bed. Chills, vomiting, achy. I had the flu. Christian took right over. Made breakfast for Nicole and himself. He got her doing her chores as well as himself. He had a big day planned to go fishing but he wouldn't leave me to do that, "What if I needed him" he said. Lunch was next. I just didn't get any better. I was getting dehydrated. The more water or broth he brought for me to drink the more I would throw-up. He had an idea. He would go to Albertsons and talk to the pharmacist. He got on his bike and rode the 2 miles. Christian explained the situation to the pharmacist who told him what to get me. He came home with Emetrol. It is a minty tasting liquid you take every 30 minutes for like 2 hours or until you are feeling better. In he came with a big spoon and a timer. He was determined to get me well. The stuff worked. With in a few doses I was feeling better but not enough to get out of bed. He ordered Pizza form our favorite place, Joe's. After dinner he told Nicole to get ready for bed and preceded to make them a bed in the living room for Saturday night movies. John came home very late. Christian was still holding vigil. When John came in Christian ran to him and said "I don't want to be the dad anymore". So cute.
All of theses words and more describe people here. Even the other parents, grandparents, friends, etc care about others here in the unit. We visit back and forth asking how their family member is and they in turn want to know how Nicole is. They know the struggle, the day to day worries of life in the burn unit.
Thursday, July 16, 2009
After morning prayers I hurried to get ready and head to the hospital. Heading out the door I realize I have no wallet. I search and I search but cannot find it any where. Well I have to leave without it I guess. I hope I don't need it on the way and the snack cart lady take pity on me and let me eat a lot of snacks off the snack cart.
Upon arrival at the University Hospital today there was a gizzillion cars and people. What do you know...the day I sleep in is the day of the ribbon cutting ceremony and open house for the new part of the hospital. The up side....I got a free T-shirt and they had free food on each floor so people would go to each floor and look at the new additions.
Floor B - Cool water with oranges, lemons and strawberries in the
water. Chocolate cookies and coconut fudge.
Floor 1 - Water bottles and Frisbees
Floor 2 - Cut up veggies and a cheese and cracker area
Floor 3 - Eclairs, chocolate dipped strawberries, butter cookies
Floor 4 - (the floor we are on) Chicken Satay, Peel and eat Shrimp,
mini quiches, bread with tapanade as well as bread with
a really delish cheese spread.
I don't know about Floors 5 and 6 because by the time I gathered from those floors I was satisfied. God truly blessed me today. He knew I wouldn't survive on the cart snack food. I guess if I had to loose my wallet today was the best day to do it on.
Nicole's fever is higher today. 103.5 now. She has an infection going on on her trunk. The started her on another antibiotic. Dressing changes happened today as well and getting new splints on both arms. That is when they saw the infection.
Nicole has had a quieter day today. She was quite combative this morning so they had to tie her down again but she has been sleeping more today. Probably because of her fever.
I was rubbing her head today. Head rubbing in our family is wanted by all. The kids, growing up, always wanted John and I to lay by them and rub their heads at night. I can only rub her toes and head so today it was head day. The memories of it all flooded my mind and I just wanted to crawl up in bed with her and hold her close, snuggle, rub her head and have her fall asleep in my arms. I laid my head close to hers on the pillow. I could feel the heat coming from her head but that is okay. This nearness is all I wanted. Rubbing her head felt more like Christian's summer doo because she is shaved. No running my fingers though her soft thin hair but having her close was priceless.
Over all she is having a better day today for which I am grateful. I wish she would just sit up and show me her sweet smile. I wish her half moon eyes would glisten with joy, I wish.....
A few hours after eating I started to feel HOT. Then I felt queasy.I thought maybe it was Nicole's room temp so I stood in the hall for awhile but the feeling didn't go away. They took my temp but it was normal. That is a blessing. Since she was already fighting something I decided I better go home and get some rest. Hopefully I will feel better tomorrow. Maybe life is catching up with me. Two good parts about going home is.... Knowing even when I am not there she is in the best of hands. We couldn't be more blessed for her to be in the Burn Unit and seeing Christian tonight.
Wednesday, July 15, 2009
Nicole's day today has been quite the adventure. It started out with regular dressing changes followed but in bed physical therapy. She had her eyes open for some of that and did raise her own legs twice. So good.
John called to have his daily talk with her. He starts out with Nikki Nikki Timbo...Her eye brow raise with some recognition. As he speaks to her in soft gentle tones she nods her head at the things he is telling her. John is having a tough time right now. We have never been away from each other for so many days. And to top it off his baby girl is struggling to hang on and he is not here.
Nicole started running a fever today, 102.5. High for a burn patient. Her blood sugar levels are in the 300's, they give her more insulin. The nurse took her off the vent so she could do some breathing on her own. It was fine for abut 45 minutes, then her heart started racing, around 170 bpm. Her blood pressure sky rocketed and her respiration's where between 50-60 a minute. She was very combative. I can only keep it all together for so long before I have a melt down. What more could happen. She lost her central line. The doctor had to move it to her neck.
The room came to life with an army of people. Respiratory, Doctors, Nurses, Aide, Social Worker, Intern. The room is only so big.
I called Christian and he came to the hospital. He is a calming influence over me. By the time the doctor has her new central line in I am calm enough to go in the room. I gown up and christian does too along with his girlfriend, C. Christian hasn't seen Nicole since the swelling has gone down in her face. HE LOST IT. He had to leave the room. When I went to find him he said, "It is too hard to look at her now. It was easier last week when she was so swollen because it didn't look like her and I could look at her but not see her." Oh sad!
We calmed down in the hall and tried again. I go straight to her bedside. Christian inches his way in with the help of his girlfriend. Inch by inch until he is next to the bed. Nicole's eyes are open so I tell her Christian is there. She moves her eyes toward him but gets a puzzled look on her face. I ask if she recognizes him and she shakes her had no. No holding back the tears again. Struggling for composure, the words don't come. What can you say to that. I hope it is the medication and it is just playing tricks on her mind. The sweet, gentle giant leaves the room.
She mouths the words, I want to go home. When I tell her she is too sick to go home she mouths back, You told me I could go home. I feel sick to my stomach. I did tell her that. I want her out of pain. I want her to be able to rest well. I want her.
Tuesday, July 14, 2009
This morning the sunrise was exceptional. It started to peek its head over the Wasatch Range. As I look out over the Utah Valley I see the Orquirrh Mountains start to wake up as the new light pours over them. Next you can see Saratoga Springs coming into the light. Utah Lake starts to glisten and twinkle as the suns rays hit the water. Slowly the Valley is awake. What an amazing sight. And to think I am privileged to witness that each morning.
I knew I have been somewhat in a fog this past week but I didn't realized how much until last night when Nicole's doctor rounded. We spoke after the surgery yesterday and he gave me an update on how things were going as well as her not being upgraded. I asked him to expand on why he wasn't upgrading her. His response was, " I told you last week I wouldn't upgrade her for 6-8 weeks." I fell apart. I am not sure where I got the 10 day mark update idea but this was too much. I now have nothing to tangibly hold onto. No...we'll see in a few day...we'll see how she is tomorrow...NO, NOTHING, NADA! He said she is to volatile and could go either way.
As much as I feel I am prepared for either I feel I am holding onto a rope that is unraveling.
Our friend Zell came by this morning with lunch for me to take to the hospital. It was so nice of he and his wife Vicki to think of me.
Good Morning Sissy! As I walk in your room this morning your eyes are open. I call your name and your eyes move but they do not focus on me. I keep saying your name over and over again and finally you look my way. Your eyes open wider with apparent recognition but then you look at me like you have never seen me before. I know it is the medication but feel blessed to have that one second of eyes wide open.
She tries to mouth words, most are not understood. "I'm cold" and "pain" are pretty easy. When she tried multiple words and I couldn't understand what it was and I kept getting it wrong she finally mouthed "shut up". I guess those words are easier to make out. The sedation is not as heavy so I am seeing eyes open more but she is staring off into space focusing on nothing (or at least nothing I can see).
Melissa, Nicole's aid, painted her toenails today. ORANGE with white flowers and blue centers. I love to see Nicole in orange. A girl always has to look her best. With no hair, painted toes are the next best thing. So girly!
When Nicole was 3 my favorite outfit on her was royal blue peddle pushers with a bright orange polo shirt. Royal blue ribbons with orange polka dots in her hair. Of course she had to have matching sandals. Love, Love , Love that outfit.
I hope I have a picture of her in that outfit. I will look on my computer when I get it next week. If I have one I will post it. I can picture her wearing that just like it was yesterday.
I requested a room change today. It won't come for a few days because someone is in that room but I hope they will give it to me. This room is very small. When I sit in my chair it is in the corner up by Nicole's head so I can not see her when I look up. My line of sight is blocked because of arm boards that keep her arms at a 90 degree angle. There is no other place for me to sit because there is so much equipment that needs to be in the room. Our current room has a window but I would give it up for more room and to be able to sit at the foot of the bed so I can see her readily. You know the feeling when you walk into your child's room and see them sleeping? I want to look up and have that feeling again.
Good night sweetness and light. Rest well.
Monday, July 13, 2009
Many thoughts have flooded my mind this past week and I wanted to share them with you.
You are my first born girl (and my last one too). The sweet spirit you brought into our home right from the beginning was unmeasurable. Christian was enamored by you. "His Sissy" he would call you.
You were blessed by your Uncle Bill Fleming. Daddy has always looked up to him as a great example. he wanted Uncle Bill to have the opportunity to bless a child and what better opportunity than you. You grew in Spirit just as Heavenly Father blessed you.
Christian and you were inseparable even before you could really play together. A few times dad and I has to go out of town and we would leave one of you with grandma and grandpa and one of you with Auntie Dana. With in a few hours you both would be sick. One or the other would bring you both back together and instantly you guys would be well. We soon learned that is we were going to leave you overnight it had to be at the same place. I guess separation was just too much for the two of you.
Many camping trips we took as a family. Zion's Nat'l Park, Arches, Moab, Canyonlands, Tetons, Crystal Springs, Cascades, Payettes, Sun Valley, Sawtooths, Pend Oreille, Spirit Lake, Banff, Tyler State Park, Illinois. We are a camping family.
Do you remember the summer daddy was a river guide on the Snake near Jackson, WY. We all became seasoned campers that year.
There were so many camping trips but the one that sticks out in my mind at this moment is when we took a 2 week long camping trip to Washington, Idaho and Canada. We were just outside Banff, Ontario, Canada at a beautiful camp ground. (in Canada they offer HOT showers and free wood already chopped for your fire). You never know a stranger. One morning we awoke to a tent with no little girl asleep in her bag. We hurried and dressed to search for you. Thoughts of you missing in another country terrified me. It didn't take too long to hear your laugh and see your half moon eyes. You were making yourself at home 4 campsites down, sitting at their picnic table, eating their breakfast in your pink pajamas, barefoot. So glad you never new a stranger.
Everyone was always, "that's my best friend." Christian more reserved, you always pointing to others and telling us they are your friend - even though we had never seen them before.
Challenges in your life became evident early on when you stopped speaking for 3 years. But that didn't stop your zest for life. Tree climber, fast bike rider, tumbler, swimmer, not afraid of anything. You learned sign language at that time. I now wish I had kept it up as good as you so when you awaken I can communicate with you better until your trach comes out.
As you grew your relationship with your brother grew also. Riding your bikes to 7-11 or Wiles to get camels (Nibs licorice), Playing spy's, washing your bikes, Playing Ponies and Polly's, Fishing together, Swimming your summers away at Thomas Pool, Barbies and Kens in the drive way.
Christian was not only your brother but your friend, protector and example. Ever the consummate companion. Where you were he was and where he was you were. Sharing a room for several years (just until age 6) because you didn't want to be separated. Sometimes it felt like a twin thing to me.
You have taught me many things:
2. Pure love of Christ
4. Be a friend
5. Acknowledge others
6. Share fully
7. Listen to uplifting music
8. Its okay to cry
9. I'm different and its okay
12. Joy in small accomplishments
These are the ones that roll off my tongue.
Your short life has been filled with challenges but that never stopped you. You always think, "there is nothing I can't do".
When you were in ROTC at Northwest High School you learned great skills. You were always so proud to wear that uniform.
You love diving. The time you spent with the Shockers dive team made you a better diver. The many hours you would climb that ladder over and over perfecting a dive. Wanting to learn more 3 meter dives than 1 meter. You were so at ease in the water.
You found your own running cross country at Goddard High School. You loved to run. I don't know where you got that from. You were so proud you lettered and so were we. You wore your letter jacket knowing you had accomplished a goal. I remember you setting goals as you completed your Young woman's Recognition. One goal was for appreciation for community. (I don't really remember what it was called). You took dinner to our local fire station several times. Bro. Coccannouer was the chief there. I know you always looked up to him.
When Christian turned 8 we changed his name. I think you thought that was what people did when they turned 8. On your birthday you told us that you wanted your named changed like Christian had. When I enquired as to the name you thought you should have now without missing a beat you said.....Snow White. You said it was because you were the fairest one of all. So cute. So like you. Sad to say that never happened.
You always loved being the same age as your brother for 9 days. Somehow I think he didn't like it as much as you did.
As you lay here sleeping I can't help wonder what is in store for you. I have wondered that many times throughout your life. I want you to know that I love you all the stars. I also want you to know of my love for you. You, though you have had your share of trials, are a blessing in our lives. God gave you to us. He knew the trials you would be faced with. He knew, even when we didn't, that we could handle them and help you through them.
I want you to know I love our Savior Jesus Christ. I am grateful for His ultimate sacrifice so that one day we will live with Him again as a forever family. I testify to you, Nicole, I know God lives and loves us. That he gave His only Begotten Son so we can have everlasting life. I know the Gospel of Jesus Christ has been restored upon the earth and we receive blessing from that restoration. I know that God is watching over you at this time and He is waiting for you to come home to Him to hold you close and comfort you.
You are my sweet girly-girl, my doer, sister-do.
I love you.
Her doctor said he would look at upgrading her at day 10 but that didn't happen. Still 50/50.
Nicole just came back from her 3rd surgery. The doctors graphed both hands and her whole right arm. They took what skin was left on her legs which wasn't too much but it did go pretty far. 2 more transfusions for her. She is breathing better and some breathing is on her own. We are grateful for that!
Flashback: You know the movie, "A Christmas Story"? Christmas morning 1990. John and I are in the bathroom getting ready for the day. Nicole and Christian are donning their new Christmas pajamas made by grandma. We can hear them giggling in the other room, waiting, wondering what Santa has brought for them, trying to be patient.
All of the sudden we hear screaming. Both children screaming,
HELP, HELP, HELP!
We dash into the kitchen(that is where the screams are coming from). There they both are, standing on a chair, with the fridge open and their tongues stuck to the freezer. We started laughing, trying to find the camera. We did get them unstuck with no damage to themselves. We had to rent A Christmas Story a show them that it isn't just them who got stuck either.
The only place I can touch Nicole is the toes on her left foot. I rub them several times a day.
Earlier today before surgery she had a choking spell. Fear raised in my heart. I got a nurse who came in and suctioned her. Her secretions are very thick and she needs to be suctioned quite often. That helped but my heart raced for a while. Either that had not happened before or I was just not there when it had. Either way I was not prepared for that. I am not afraid of water but I have a fear of drowning and I liken thick stuff in the throat to where you can't breath to drowning.
I am a little anxious today. It is hard to concentrate and hard to focus. My mind flits from one thing to another so fast that I can hardly keep up. Little saying she says, sweet things she does, all the memories. There is hardly a memory of Nicole that it doesn't involve Christian. Two peas in a pod they were when they were younger. Christian even saved her life one day.
They were fishing at Thomas Park in Carrollton, TX. It had rained quite a bit the day before in our area but what I didn't know was that up North it had rained a lot. All that rain had filled the rivers in our area. If you don't know much about rushing rivers, they eat away at the banks as they rush by. You can't really tell because the top is left undisturbed. There they were, Christian, Nicole and Katie (their friend) fishing. Nicole was standing on a place that had no soil under her to support her weight. Not long after moving to that spot the ground gave was and she was thrust into the river. Christian yells to Katie to run to our house to get me. She takes off running while he is running along the river calling to her and looking for a long stick or something. Christian is seeing his sister bobbing up and down and sees nothing that he can get to her for her to hang on to. Running far ahead he gets to a near by bridge where he jumps in and holds onto the steel part of the bridge. As she comes toward him he pushes his legs out to grab her or have her grab him. It works. She is able to grab his pant leg. Just as I pull up in the car with Katie, there they are struggling to get out of the water. As the fear in me starts to subside I am in awe of the selfless act Christian performed. He didn't see it that way. He just didn't want me to be mad they both were all wet.
It has been 18 months since our last family picture. It was Christmas time and I wanted to have our pictures done. Alicia (our niece) is a great photographer. She met us one early morning a couple of days after Christmas. We went to Lagoon walk. It is a trail next to Lagoon amusement park. So beautiful. It had snowed and the walk ways were untrodden. The light was amazing. It is my favorite time of year for pictures. I love the way snow looks in photos. When it was all done the kids both asked that the next time we have family photos taken can it PLEASE be in the summer. I was planning on asking her to do them again this summer at our family reunion in Antimony, UT. Now I wish I had asked to do it last month.
Sunday, July 12, 2009
Today I was re-charged at church today. I don't know how others feel about the Sabbath but that is my re-charging day. Mostly because I listened to great uplifting music. I love the quietness of Sunday. No rushing around, no washing machine running, no overhead speakers announcing specials. Just quiet.
On my way to the hospital today I stopped at Christian's TX Roadhouse. It was nice to see him this morning. He is so comfortable in this element. They were getting ready to open so he needed to taste and temp all the food. Guess what?!.... I got to do it with him. It was so fun. First we tasted all the salad dressing, next came dipping sauces followed by sauces and hot food like baked beans, green beans and sauteed mushrooms. It was so amazing to see how they do it all and if it is not right it goes right back to the person making it so they can do it over. Of course he sent me with lunch too. My fav....beef tips with mashed potatoes, brown gravy and green beans. Washing it down with a Cowboy Cooler. Yummo
When I arrived at the unit today my sweet friends Amber and Preston were waiting there for me. We had a great visit. They mean so much to us. Amber along with her sister Suzie worked for us at our Wichita Clinic a few years ago. We love them.
After they left while I was reading to Nicole she actually opened her eyes for about 5 minutes. She just stared off into space but she had her eyes open. YAHOO! She has great eyes. The right one is blue and the left one is green. So good to see those eyes again.
I have really missed not talking with her everyday. Well now I am the talker and she is the listener. Not a position she likes to be in but now I have her un-divided attention. I love our sweet chats. Don't get me wrong there are times I wish she wouldn't call so much but now I wish she was calling me. Of course, we always want what we don't have.
Do you know that a ward (congregation)is assigned to this unit. People come and bring sacrament and a message to those who are here so they don't have to leave their loved one. I think that is awesome. What a selfless act. It is not easy to come to the unit here and see all the suffering. I guess it is because they know the plan.
John's sister Anne, her husband Rich and their daughter Bethany came for a visit today too. What a calming visit. It is so nice to talk to others who speak your language. They love Nicole. They have seen her struggle over the years and has so fully and genuinely accepted her. I feel so much love from them when I am around them. I just love them.
My dad also payed a visit tonight. I was happily surprised. He came by himself which is so unlike him and he wanted to go on the unit. He hasn't been on the unit yet. He actually gowned up and went into Nicole's room. I knew it was very hard for him to do that. It took a lot of courage. Thanks DAD!
I am here for wound care tonight. The nurse and aide take off Nicole's bandages and wash her. They are so gentle. I know they have to get in there and get the dead off but the way they go about it is very gentle and calming. So many questions I have and they answered all of them. First the washing, next the silvedene. Wrap her up with curlex and put the pressure bandage on. They do it with such ease. I asked why they want to work in burn unit. They both said it was because the patients are so awesome. They have such a fight in them to live. I loved that.
Its late...the unit is quiet. Peace is roaming the halls. Good night.
Saturday, July 11, 2009
The first day when we learned of the tragedy, Angi did not want to tell Christian because his plate was full. I called anyway and we are so glad I did. I wanted him to not ever learn of any part of this from someone else and ask why didn't you call me. Christian is a gift from God to Angi and I and has been there as a strength during times of need.
We feel love and comfort that is strengthening in these moments. Thoughts of endless painful events that may come to an end for Nicole are comforting with the belief that when we die we will have rest from our needs and reasons for weeping and have the environment surrounding us of our God, the Savior and our loved ones.
We have learned to look at Nicole, even in moments of high dysfunctional emotion, hers and ours, and see the sweet girl we know and love and try to speak to that person.
When we went to see her in the hospital she was swollen, red and wrapped in a protective covering, a tube down her throat, surrounded by tubes, lines and monitoring machines. We focused on seeing the precious girl and not the drama. She displays courage to fight, to survive and at moments when she comes out of her sedated state, she wants to write on a tablet or sign. Her first written words from her wrapped third degree burnt hand while trying to clear her throat of fluid that was so much she gurgled to Angi and I were "I'm sorry" and then "I love you." My greeting to her "Nikki Nikki timbo.....
A patient who worked in a burn unit for 3 years back in the 70's said at that time few survived a 40% full body third degree burn. Nicole has 60% of her body burned and 80% is third degree and worse. Today doctors give her a 50/50 chance.
We feel a deep comfort that whether she lives or dies it is totally in God's hands and according to his plan.
Nicole's life has been tutoring us in patience and allowing the goodness of so many people to exercise faith to pray and give strength and peace to Angi, Christian and myself. Many times our life's struggles and struggles others have, allow us to grow in our faith and belief in a loving merciful God. She is still here with us.
For those of you unaware Nicole has a mental illness. She has struggled since she was three years old and she has been diagnosed with Borderline personality disorder, severe depression as well as PDD-pervasive developmental disorder which is in the autism family and other learning disabilities and others. She has heard voices in her head that have created so much torment and pain that she self inflicted pain that would be horrifying to most, but that pain would stop those voices. Unfortunately that has left her very lonely many times in her life.
We have struggled many years to appreciate what that really is and have had a difficult time comprehending it. Yet in spite of that internal environment, she gives us and so many others precious memories. She has forced us to grow and learn skills we would not have chosen without being faced with the challenges.
Time is a great healer and although we cannot control tomorrow or the past, today is that time and at the end of this day if we can say we did the best we could do with the knowledge we have, I believe it is enough for our merciful unconditional loving God.
For those of us who feel stuck unable to move forward because of the enormity of this life changing event we offer....Look at the whole picture, all of it, and pick a piece of it and do that piece. You will find that as you chunk it down into pieces and parts you can move forward with what is happening now and in your fullness of life's challenges. You will see that in its smaller pieces that by themselves, doing what is needed, is not a problem for you. The pain of this amount can be worked through.
Many times, so many times Angi and I have cried to the Lord "it is more than we can handle and we are at the bottom of our rope" holding onto the knot with our fingertips and felt so desperate, overwhelmed, exhausted, spent and felt like we had nothing left to give. The rope got longer, the day by day, hour by hour, tasks were forcibly walked through and we made it. This has occurred 100's of times in our life and with Nicole and while raising our kids, over our careers the ups and downs, even because of church members, in and outside our church, their choices and because of many other things. Now because of those numerous times of the rope getting longer we have gained the strength of knowing we will make it through each challenge and that we need to embrace the struggle or conflict and define it so it doesn't remove us from our fixed course of returning to God with honor having learned that the only honorable way to exit this life is to live it even if that means minute by minute hour by hour day by day week by week, etc.
We pray for those praying for us that they too will be comforted.
Thank you for your faith and prayers on our behalf. We are strengthened and comforted because of your prayers. Whatever happens will be according to God's perfect plan. We love each of you. We are amazed how many lives she has reached.
God comfort you and strengthen you who have also experienced the pain of this event.