Wednesday, September 30, 2009
It is hard for me to gage how she is through out the day when I am not there. All I get now is a snippet of what happens.
The nurse told me when I came in today the PT went well. She walked further today which I was very happy about. Wound care went well too. They are giving her a phentynal (Rx) lollipop to help her with her pain. It seems to be working better than a shot. Her back is showing improvement which I am so happy about. Maybe if we can get her legs covered and her left arm we can get out of this place.
I pray for fast healing on Nicole's behalf so we don't have to endure any more separation. My heart is being ripped out as I imagine hers is too. I wish I knew what to do. I wish I knew where to turn. The only thing I can do right now is pray that we will be led to the right person to help us through all this. If this goes on much longer I might have a nervous breakdown.
Tuesday, September 29, 2009
When I got there she was still in wound care. I was so happy to see her come back to the room. We had a great talk and then went out to the sunshine. YEAH!!! It was so nice to get out to the garden. And nice to be away from the unit.
Nicole's wound care went well today. I was glad to hear about that but I wish I was able to see it myself. PT went well also. Nicole has some weird bacteria right now. They haven't pinpointed it as of yet so we now have to wear gowns when we go in and if she leaves her room SHE has to wear gown and gloves. They don't want her to get or give anything to or from anyone. For some reason the unit seems extra hot today and with the gowns on it was almost unbearable.
I can tell Nicole is super sad now. She and I have a special bond and I know it is hard for her not to have me there during the day. Very teary. Me too.
After I left the Unit today I had the privilege of going to the Draper Temple. Boy, is it beautiful. I love to sit in the Temple and ponder over things. I do have to say that is a perk of being here in Utah. I can go to one of the Temples just about any time I want to. So nice.
The wind is blowing heavily here. I was about blown away while I was looking at the spectacular falls colors in Corner Canyon. I love to see the trees and bushes change. Yellow...Red...Orange. Brilliant beyond words.
I am grateful for a loving Heavenly Father. He knows me and our situation. Last night, I was upset and in talking to John got him riled up. We prayed together over the phone. What a great invention. So glad we have that luxury. I love to hear John pray for I know he has a direct line into heaven. When he was finished I felt a lot better. I was still upset but I knew Heavenly Father heard our supplication. While pondering our recent prayers I was prompted to read D&C 98:2-3. WOW! What more could I ask for.
Monday, September 28, 2009
To accept the things I cannot change;
Courage to change the things I can;
And wisdom to know the difference.
I want this nightmare to end. I am too tired, too missing my husband and too not in control of my feelings. Just once couldn't my life be easy.
And then this comes to mind:
Proverbs 3, 5-6
I can't stand the thought of us coming this far and things not working out. I know it is hard for her. I know it is not going to be easy once we leave here. I know things won't be the same. But dang it, Life is hard. We have to work for it. Of course we can get help. That's what we are all here for is to help each other.
Well, I just found out that visiting for Nicole is being limited to only from noon to 2pm. and only immediate family. Oh my gosh. How will I stand it? I can't stop crying I am so upset by this news.
I have to figure this out before I can't think.
Her eyes are clearer today. I can tell she is feeling better than yesterday. This progress is great. Each increment of progress makes my heart leap for joy. Wound care was bed side today. It is a little easier for her to have it done that way and once in a while that is okay. The tank room is really the better way to go. The water runs over her there and washes everything away.
Nicole and I were able to go outside again today. What a beautiful day to enjoy the sunshine. It was a little cool for Nicole so we just bundled her up in blankets for the trek. We walked the grounds. (Well, she went where I went. She didn't have a choice.) There is not alot of sidewalk space as you can imagine. We have to be creative. Down to the main road, back around through the parking lot, around the back where the ambulance parks and then back into the hospital. The sunshine felt fantastic on our faces. Sushine really is good medicine.
Tonight, music therapy came in again. It is so fun to see Julie and Kristen. It really brightens Nicole's day. Julie learned how to play a Sugarland song for Nicole. After they sang hymns and primary songs. We even had an aide come in to listen. Music is good for the soul.
Christian and I had supper together. I love him. He is so easy to be around. He told me today he wants to ride a bull. A REAL BULL! Are you kidding? Why? Why would anyone intentionally want to do that? His cousin said she would try to find one for him. (She has connections.) I hope it is not the season for bulls to be ridden.
Saturday, September 26, 2009
At club meetings the women brought their children and they got to go into a special room where there were other women who brought activities and snacks. Other kids your age were there. Happy smiling faces (most of the time) and laughing.
In the big room (the cultural hall) were the women with the cards. They busily sat up quilting frames and other activities. There were always plenty of chairs for all who wanted to come. These card carrying women with their smiles on their faces would ask how each other were. What could they do to help? And, spoke of the babies being born to another card carrying woman.
The kitchen always smelled of wonderful, delicious foods that were being prepared to feed these card carrying women when their work and laughing was done. Their children would bring a sack lunch but those women were given feast for their hard work. Not only the hard work in the cultural hall but their diligence in being worthy card carrying members. I couldn't wait to eat in that circle of women. To be worthy of a card.
This evening I was privileged to be able to attend General Relief Society in the Conference Center in Salt Lake City, UT. Do you know it seats over 21,000 people? It is so big a 747 fits inside. As luck would have it I was able to attend that meeting with my mother. Relief Society is the largest Women organization in the world. It is comprised of women of our faith. General Relief Society is when ALL the women are able to watch via satellite or internet, watch on TV or listen on the radio the proceeding from the Conference Center in Salt Lake City. The president of the Relief Society as well as her counselors speaks to us. They give us counsel and direction. Our Prophet and President of our church, Thomas S. Monson, as well as his counselors were there.
I may not remember all the words that were spoken but I will never forget the feelings of love and compassion I felt there with all the women who were there for the same reason I was. To hear the words that our Father in Heaven wants us to hear regarding US! The women that spoke were amazing. And Pres Eyring spoke also. What a giant of a man he is. As the meeting concluded only the women there were privy to this next action. Pres. Monson arose. We waved at the congregation section by section. Each section waved in return. It looked like the wave at a football stadium. One section waving then the next, then the next continuing on throughout the Conference Center and around through the choir seats. It was awesome.
Nicole stood and took a few steps today. We are back in the walking mode. I was so happy to see that. Just like when your child is learning to walk, the joy you experience is indescribable. PT really wore her out. I suggested PT take a page out of the Montessori handbook. Montessori students engage in many tactile experiences for example; a student may get out tongs and pick up cotton balls and move then from one bowl to the next or maybe use tweezers to move beans back and forth. I think it would work manual dexterity on patients that are further along in the healing process.
Nicole is moving cones back and forth, while stacking them also. Clothes pins are also clipped to the side of a container as a way to start using her fingers. I don’t think she likes to do it much but maybe if they changed it up some it would lessen the boredom.
The unit also let us escape to the sunshine today for a while. It felt so god to get out today. The sun felt great on our faces up until I was so grateful that she was outside that I leaned over and hugged her. I thought my arm was high on her back but it was not high enough. As I touched her pain shot through her body. I believe the pain was excruciating. We needed to go back to the unit so she could get out of the wheel chair and on her back to try to alleviate some of the pain. I felt so bad. What I thought was going to be good for both of us turn bad quickly.
Nicole is able to have the speaking button on her cannula for part of the day. This time Nicole is able to force the air the right direction without the air escaping around the trach. She is speaking again. Her little squeaky voice is music to my ears. Lip reading is not my forte.
This week has been a growing experience for me. Even though I thought I was not taking things for granted I learned this week about different ways of looking at things in life showing the whole picture and not just pieces and parts. You may not be taking a piece or part for granted but when you look at how they work in conjunction with each other it may be a different story. I am working on that this week. Life, at any moment, as we know it, can be changed in a split second. It certainly has been for us.
Each one of us has a different story how this has changed us. From the outsider it might look like it is a huge burden. To another may be life altering. Some are curious while others are wishing the whole situation would just go away. Maybe you are one who wishes they could understand. Maybe there is no understanding. What I wish is for the pure love of Christ. We don’t know why things happen. We don’t know why some people seem to experience many more trials than others. We don’t know any of the why’s anyone can think of but I do know this. I know that because of how we deal with the trials we are given AND how we help others deal with the trials they are given helps us to progress and be better examples of Christ. We don’t have to understand what is going on in a particular situation, we don’t even have to pretend to like the situation but we do need to love that person as Christ does and our Heavenly Father. I hope I can do a better job of that.
"We can't judge a person until we walk a mile in their shoes"
"...And if I don't want to wear their shoes, I have no place to judge"
"Yep, you said it sister."
The ending comments made between a nurse and myself at the burn trauma ICU at the Univ hospital in Salt Lake.
Nicole is a week shy of her 23rd birthday. She likes the color green and Hannah Montana. She loves sushi and holding babies. She does not like chocolate or egg rolls. She drives a hand me down green van and is absolutely fearless. And is completely in love with life. Nicole also is haunted by hallucinations and voices. Many times she gets them to go away only with her own pain. She has survived accidents, attempts and episodes I could never fathom up for my own life. Nicole is so much stronger, braver, grander than myself.
I went into Nicole's room at the burn unit today and I was so happy that she had more decorations from family and friends up on her wall and that she looked less swollen, not so "spread eagle" and didn't have any tubes in her mouth. So much more comfortable. The blue gown matches my eyes, but that's the ONLY thing decent about it. It's plastic and makes me sweaty and I have to take it off and get a new one every time I step out of her room. But I know she would do it for me. Her face is getting back to it's pretty state of normal and she flutters her lashes and wrinkles her brow when she hears my voice speak to her.
'Hello pretty lady.' I sit down. They take her away to wash her, redress her and make her smell so clean and girly. Her entire body is bandaged and covered sans half her neck and her head. They are so extra careful with her delicate skin, the little she has left. They tell me I won't see her again for another hour, but that's ok, I can work on my blankey I am knitting for her. It's soft, soft baby cotton, the color of cream roses and baby pink daisies. I'm hoping she will like it.
I watch Disney's Hercules on Disney Channel while I wait and look like a goofy granny in a 23 yr/old body sporting sandals and a blue plastic gown. I can't help but think of her throughout the movie. Especially when Herc sings:
I have often dreamed
Of a far off place
Where a hero's welcome
Would be waiting for me
Where the crowds will cheer
When they see my face
And a voice keeps saying
This is where I'm meant to be
I'll be there someday
I can go the distance
I will find my way
If I can be strong
I know ev'ry mile
Will be worth my while
When I go the distance
I'll be right where I belong
I am imagining Nicole on the ledge of that cliff with her arms outstretched and singing to the sun. I am thinking of her struggles and pain and all she has had to suffer and endure. I'm thinking how trivial my own problems become and how grateful I am for my working body, my skin, my teeth, my ability to walk and speak, my hair and my life. I am grateful for a healthy mind and think of how sweet will be the day when people will see Nicole for Nicole and not the cards she has been given. How wonderful it will be for her to see how many fans she has, to not have to suffer through physical, mental, emotional and social pain. I hope to be there. I hope I can prove I belong with her.
I also brought her these tiny posters I painted for her with sparkly stickers. I just know she'll love them. They are freckled with mistakes but I don't even think she will notice, she'll love them just the same. I hope my love is like that. Not examining the world and its creatures for flaws first but being so excited that it's there just for me, just the same.
I read to her from Heartbeat. Oh man do I love that book. I have read it at least 5 times and can never get enough of its childlike simplicity and poetry. How beautiful only a few lines per page can be. Nicole's heartrate goes up and pretty soon so does mine. I get scared that I'm making her too excited, that she loves the book almost too much. So I stop.
"Girlfriend, I don't like it when you do that. Maybe I'll just stop reading." Book closed.
She gently and slowly shakes her head. Finally! A response!
"Well then Missy, you gotta chill out. Sheesh."
I stay there for 5 hours. The time goes by SO FAST in that room! It's so peaceful and calming, and yet, quite stressful at the same time. My heartbeat rises every time a monitor blinks or a meter chirps. I don't want her to be scared and I don't want something to go wrong. I tell her about Tyler's visit to her house to see her Chiropractor poppa and I tell her about some of the kids in the burn unit relearning how to ride a trike up and down the hall. I tell her that I'm making something special for her birthday in a week and she better not peek at what I'm doing or else! I say her name a whole bunch and sometimes she opens her eyes for a few moments and sometimes she moves her lips, her eyebrows, her eyelashes. I call her Pretty Girl and Smarty Pants. I hope she remembers me when I come back.
I remind her about the time I visited her in the hospital a few weeks ago before the fire and how someone asked if we were sisters. I felt a flashback of the feeling of uncomfort and embarassment I felt as a fourteen year old when people thought we were twins/sisters and Nicole was so obnoxious to me. I'm much more patience and have admiration for her now, so I scared the feeling away. Nicole squeezed me from the side and said "No, she's just my BESTEST BESTEST friend in the WHOLE WIDE WORLD!"
I told her the same when I left her room.
Friday, September 25, 2009
Number 2 amazing thing....He is a great dad. He loves our children so much. We have so many great memories. I have this really fun picture of John wrapped up in our 8 skin sheep skin that John brought back form New Zealand. He is acting like a bear and Christian is giggling and running to him with his arms out strtetched. So fun!
Number 3 amazing thing....he is running our clinic in Kansas by himself ( with the amazing help of the girls who work for us). Many nights he is there until midnight or 1 am getting things done that I woul dhave been doing. He is doing that so I can stay in Utah to help Nicole recover. Many nights I call him to say good night and he is still at the clinic.
Number 4 amazing thing.....He still keep a smile on his face and in his voice when he talks to me each day. I know it is very hard on him being apart. it is hard on me too. He is being strong.
There are so many amazing things he does, too numerous to count.
I am grateful for the happiness he brings me each day. He shares himself so fully with me. He lifts me up when I can no longer go on. He lightens my load. He carries me throught he tough times. He loves me no matter what. He lets me chatter on and on even when he really wants me to be quite...like on the ski lifts when all he wants is to hear is NOTHING and look at the new snow falling all around us. He loves me in spite of all my faults and weaknesses.
He loves me and I love him!
Today has been a day to run erronds, too. Stuff that just hasn't got done. Bank, Gas Sation, Bank, Bank, Leslie's Bakery. Of course Leslie's. Their rum balls are amazing and the cheese danish, to die for.
I was impressed when I came to the unit today. Nicole was sitting up in bed and her eyes are clear. That is a good sign. I can always tell when she feels better. And her sense of humor is back. Speech visited her today and they were able to get the speaking valve on for a while so Nicole was able to say some words. I am so glad we are making progress. Her life and mine is much better when I can actually hear her words. No misunderstandings.
Sam, the therapy dog, came for a visit today. He is a Golden Retriever. So sweet is he. He was eyeing my lunch. I think if I had left him along for a second he might have eaten it. Nicole loves to have the therapy dogs come for a visit. She was able to extend her hand over the side of the bed and pat his head. I am sure she is looking forward to the day when she can get down from bed and really pet the therapy dogs.
Allen, a former patient, was on the unit today. It was so good for Nicole and I both to see how he has progressed. He was burned equal to Nicole. He was on unit for 96 days. We will be surpassing him by quite a lot but we have the same goal in mind......Going Home!
In therapy today, Nicole was able to stand again. She stood for 45 seconds. She will be building her staminia again in hopes that she will be taking steps again. Therapy said she did amazing today. It is hard everyday. I pray for it to get easier and for the pain to be lessened.
Everyday I am amazed at the blessings that come our way. From the nurses and the aids, to the church leaders over the hospital. I love to see the girls who keep Nicole's room tidy. They always have a smile for Nicole and myself. The snack lady is lovely too. Each person has blessed our lives. Smiles, hellos, how are you?, bringing me a drink, answering my questions for the hundreth time, making Nicole comfortable, Holding her hand when she is hurting or scared, encouraging her, their gentleness, the love they show her each and every day. All blessing sent to us. Thank you.
Thursday, September 24, 2009
I came to the hospital after the taping to find Nicole having a very high fever again. And in quite a bit of pain. What am I going to do with her? I wish I knew. Right now the only thing I can do is stroke her head and hold her hand.
I wasn't here for wound care but they said it was good. Dr. Cochran took her off the surgery schedule for tomorrow. Nicole's back is still progressing so we are going to watch her back and see how it is healing before she puts the homograph on again. Well I like that. I don't want her to have anymore surgeries than necessary.
I need sleep soon. I think I am getting sleep deprived again. I hope I sleep well tonight.
Wednesday, September 23, 2009
From nearly the beginning our target date was Oct 2nd. Today we have been told a minimum of 60 more days. Our new target November 23. WOW! That is so far away. But that would be a great birthday present for me. Ironically that is my birthday. That date will tentatively be the discharge from the burn unit but not from the hospital. Nicole will go to the rehab inpatient center from the unit for 1-3 months. We were so hoping she was going to be home for Christmas but that just probably isn’t going to happen.
Nicole is looking a little better today. Her eyes are brighter although there is no twinkle I can see hope there.
Her would care was great today. All Nicole’s bandages came off and we were able to see the homograph sights on her legs and arm. Her legs looked great. Adhering well. Left arm the homograph is still slippery. Hopefully in the next couple of days it will tighten up.
Nicole is mostly breathing on her own now and the doctor put in a smaller cannula which is the first step in getting to talk again. We are very happy about that. Her lungs are doing better also although she will stay on IV antibiotics until Oct 1st.
Nicole’s back is looking slightly better. Thanks to nurse Kindi. As many things as has been tried and failed, she started changing Nicole’s linens every 4 hours. It has helped Nicole’s back be drier which in turn has helped in the healing process. The upper 1.5 inch of her back is starting to look really health. Now all we need it the rest to come on board. If the rest starts to heal up Nicole will not have to have the surgery on Friday. I would be happy for that. I think that anytime the body kicks in a does the job it was intended to do the better.
I am sure it is lonely to be lying in bed day in and day out. I purchased Nicole a book for her birthday. I brought it to the hospital today to see if it would help pass the time. Nicole loves to bird watch. This book had some 200 bird calls in it. There is a picture of the bird and then you push a button and it plays the call. Some birds have more than one call. The first one we listened to was the Canadian goose. Her eyes lit up and she smiled. It reminded her of Kansas. Kansas you say? Well, across from our home is a lake that many Canadian geese are at year round. We hear them honking in the skies and run out to look at their beautiful V shapes gliding across the sky. It really is an amazing sight. They are so close you feel like you can reach up and touch them. What a fun book.
Our friend Karen gave Nicole a beautiful angel statue. It is called: ‘Angel of Healing’. It sits on her DVD player which is high in the air so she can see it every day. Today she asked that I get it down so she could see it up close again. She mouthed the words ‘beautiful’ and then ‘watches me’. I am so glad she has something that comforts her.
Tuesday, September 22, 2009
There was not alot of change today. Nicole's lungs are not inflating like they should so respritory came in several times today to force air into her lungs to get then to work better. I hope the test results comeback soon so we can get the right antibiotics on board. I know that will make a differance.
Nicole is just exhausted from everything. She slept most of the day. It is hard to see her just sleeping. I want to talk to her and tell her she is amazing. I want to instill in her all the things a mother should teach their child. I want to tell her about my day and the amazing things I have been reading about or seeing or watching outside.
When the kids were little we would take lots of walks. They would each have a zip lock bag in hand. (It was for all the treasures we would find.) We would explore different areas like walking on the banks of the irrigation ditch on Fardown Ave. They would find pussy willows and pebbles, long willowy blades of grass or cat tails. Each child would put their lucky finds in their bag and we would go home and dicuss what we found.
One time we made collages from treasures. Christian made a picture that used bark and leaves to make "real" trees and grass to make, grass of course. Then he got pussy willows and took them apart to make billowy clouds. Water color filled in the rest. I loved his imagination. The world is a wonderous place. We are in no shortage of places to explore. All we have to do is look around us. The world is an open door to all possibility.
To see if I could find,
A little something that would say
Just what was on my mind?
However there was not a one
That captured it just right,
For no one else can understand
Just what I’d like to write.
I even find it difficult
To try to write it down,
For how do I portray to you
The love that I have known?
I close my eyes and what I see
Is someone I adore,
A person who is beautiful
Right down into their soul.
Mere words cannot describe
The many qualities you show,
The love and caring nature that
You share with those you know.
Your kind and gentle temperament
Your sweet angelic smile,
Your softly spoken sentiments
That reach across the miles.
Your smile and laugh that sparkle with
The softness of your sighs,
The way your face lights up a room…
That twinkle in your eyes.
The loving gestures through the years
That quickly come to mind,
For always you’ve a gentle word
To calm and soothe I find.
I struggle and I search to try
To find some words anew,
And yet I cannot capture
All the things that make you you.
I shall therefore be satisfied
That you must simply know,
Just how I feel about you
For the words I cannot show.
With all my love for you Nikki
As I look at each one I see John and I. That card is my most precious card. It is a card that cannot be discarded. It is my trump card. I have worked so hard for that card. Our life has not been easy by any way shape or form but it has been good. We are good for each other. We complement each other in way I never thought would happen. I am neither the easiest person to live with nor is he but we have managed to bring out the best in each other. We strengthen each other’s weaknesses.
The next card is Christian. What a lucky card that one is. I do have to say we have been blessed to have him in our family. When he was born he was an easy baby. Hardly ever crying, being content when I was doing other things. Quick to smile and laugh. He is the apple of our eye. We saw early on how caring he was. He wanted to share and made sure others around him were happy. Before he entered into something he looked at it from all angles. Take for example skiing. When he learned to ski he was cautious. He loves skiing but he also made sure he was safe and those around him were too. Before he would take a run he looked far ahead to see if there were obstacles in the way. I know that was not always the popular thing to do but that was him. I know he doesn’t always do that now but it is a quality I always admired, looking ahead. We couldn’t have chosen a better son, one who is caring, thoughtful, kind and loving, had we put in and ordered him ourselves.
Next is Nicole in my hand. It is hard to know how to describe this card. So complex yet so easy. From before she was born I knew we would have a daughter that would face many challenges. I had a dream when I was pregnant with Christian of that very thing. I thought we were actually having a girl and that was a dream about her. Was I surprised when HE was born? From the minute she was born she has been faced with hardship. This little girl that has been entrusted into our care has been a joy to raise. We have had heart ache and sleepless nights too many to count but we have seen the true spirit inside her. The one she will be when she leaves this life. And that is the joy.
The other cards in my hand are not worthy to be discarded either. These are the cards that come in and out of our hand. You know the ones …….. the ones you lay down because you don’t need them at this time and so you draw for a new card only to realize a few rounds down the road you wish you hadn’t discarded it. Like parents, friends, colleagues, neighbors, relatives even the bag boy. Especially the bag boy, when you are too tired to carry out your own groceries and he offers, then babbles on about nothing on your way to the car then ‘carefully’ puts your purchases in the backseat and gives you a smile and a ‘have a great day’.
My fresh perspective...... we are given many challenges. Of course we don’t want them. But we ‘get’ to have them. They teach us many things like patience, understanding, graciousness, love, peace, kindness, honor, forgiveness. Forgiveness, now that is a biggie. We all need to receive it as well as give it. Forgiveness is wanted by all but it is hard to give. I pray for forgiveness for past things I have done and I hope I receive it. We are not in any way shape of form perfect nor will we be in this life.
I see my sweet Nicole and I know of her imperfectness and sometimes see why God has given her some of her trials. (Mostly to help those around her) Have you ever thought of it in that way? My trials not only help me but also help those around me. I also see with some regret my imperfectness and pray for my weaknesses to become strengths.
Well, that is my fresh perspective. Today I will see the joy in those around me as well as the joy in our situation.
Monday, September 21, 2009
One hour, 1.5 hours, 2 hours, 2.5 hours. What is going on. Just as I get up to find out what is taking so long, the surgery doors opened and they are bringing her back to her room. Dr. Cochran will be coming to talk to me soon.
The report....A different trach was inserted so they can see more. They took samples of her airway and bronchial areas to see what we are really dealing with. They scoped it also to get a better looksee of things. I hope the samples come back quickly. Although it seems like everything takes two days.
Next on the docket was to get cadaver laid on the legs as well as her left arm. But, first they have to shave off the outer tissue that is so infected and send it off to the lab to make sure thay know what they are dealing with there too. Laying the cadaver tissue goes on smoothly and without a hitch. Yes, there is no hitch there but we do have one. And it is a doozy.
What are we going to do with Nicole's back? Dr. Cochran is very perplexed about her back. "We should not be here at 79 days out and be sitting this far from recovery. I would have expected that Nicole would have been 95% healed by now." As we talk back and forth she tells me fo the plan.
Plan A - Thursday or Friday take Nicole back to surgery shave a thin layer of tissue from her back to try to stimulate new growth, lay cadaver skin. If that fails like the last one did go to Plan B.
Plan B - Take Nicole back to surgery and do Plan A again. If that fails Plan C.
Plan C - Well, There is NO PLAN C.
Dr. Cochran has no idea what is going to happen if Plan A or Plan B don't work. What?! If the team doesn't know what to do, what will happen? The unit has been doing everything they know how. Wound care is very important and that is happening like clock work. Antibiotics, IV and topical are on board. What more can they or I do........
I can pray for God's intervention.
By the way, Nothing can be done for Nicole's liver. Burn patients typically get an enlarged liver although Nicole's is enlarged in hyper mode. Dr. Morris said it was the 2nd largest liver he has ever seen. I hope it stays functioning.
Sunday, September 20, 2009
What a beautiful day today is. Robin's egg blue sky with a slight breeze. Who could ask for a better fall day. I just love waking to the sun peeping its head over the Wasatch range. Several years ago if you had asked me if I would ever want to live in UT again the answer would have been a definite NO. The mountains were claustrophobic to me. I don't know why, since I had grown up here. Maybe it was living in the plains for 17 years. But now I love to see the mountains each morning.
Nicole's pneumonia is slightly better. They have her on the big guns as far as antibiotics go . 2 less bags today are hanging too.
She is more stable too. Urine output has increased. Nicole is scheduled for surgery again tomorrow. I was so surprised when they told me that today. Dr. Cochran will lay homograph again on both legs and Nicole's left arm again. Those area will continually need homograph until we have some area to take donor skin from.
Nicole is off the vent but is receiving humidified air through the trach. That is very good news.
Saturday, September 19, 2009
So Friday, Michael McLean and Cherie Call sang and Chieko Okazaki spoke to us. What great messages to listen to.
After, we went and picked up Bethany, Anne's daughter. We ate Cafe Rio and talked. It was so fun to see Beth. This is her first year at Utah State. Then we went back to her apt and talked for a few hours, I went to sleep and Anne and Beth talked til 3 am. So fun for them.
This morning we went back to the venue to hear Cherie Call sing again as well as hear the messages of Jill Manning, Brent Top, Mary Ellen Edmond's and Emily Watts. Each person speaks on something different. Something they are passionate about. My cup was filled.
What a fun day to be able to spend it with Anne. We found out that we like so many of the same things. All-Sorts, Brownies with nuts. Water with no ice. It is not like, oh I like hamburgers and so do you, NO I don't know anyone else that likes All-sorts. It was so fun. I am so glad I went and glad Anne was able to experience her first TOFW.
Thanks for going with me.
One sweet assurance I know is GOD is in charge. Not the doctors, not us and certainly not Nicole. God is the ultimate giver of life. He is also the taker. The life my sweet Nicole has been gifted is not one of the easy way. From her first breath she took she has been struggling. She first day of life was one of wondering and waiting. She was rushed to the NICU with John in tow and me left to pray for her safe return.
She has brought much joy but has been plagued much of her life with health issues, both physically and mentally. She is one to make the best of a situation if at all possible. Don't get me wrong, There have been plenty of times when frustrations were high on all levels and with all family members. But we take our challenge and do the best we can with the knowledge we have.
Nicole was always the dare devil. Climbing trees higher then she had business climbing. Skiing faster then she should have all the while loving the wind whipping in her hair. Feeling free.
During wound care we found out that the homogragh that was laid on Nicole's back and buttocks didn't take. The entire area had to come off. When it came off the area was so wet and oozing. Now what? I don't know. For now that have her on her side with the fan blowing on her trying to dry it our. She will be switched for hours at a time to try and get that area dry. That is about one thing we haven't tried yet.
The dentist also came into today. We thought Nicole had 1 more loose tooth but it is actually 3. On Monday he will be back to take an X-ray to see what he can do. He thinks if it is possible he will wire the loose ones to tight ones and see if they will tighten up. I guess we will see what Monday brings.
Nicole's blood pressure is extremely high and they have started her on some medication to lower it. I look across the room. There is so much paraphernalia there. 11 bags hanging and they just took off 3. I want to go back to the days of only 2 bags. I know that is not possible at this time. I wonder if we will ever get back to that again.
Peace I send to you my sweet Nicole.
Friday, September 18, 2009
I came in today as she was finishing up dressing change. I stood back and just watched the team wash her and redress her. I have seen this many times but today there was so much peace in the room. Quiet voices, each nurse working as one with the other nurses. I am grateful for all they do for Nicole. I am grateful especially today that they are being so careful, so gentle. Thank you for your kindness today.
Nicole has fought so long and so hard. I wonder today if she has any fight left in her. I wonder that because I don't know if I would. She is much stronger than I. I love her all the stars,
Thursday, September 17, 2009
Nicole had a CT scan taken this morning. When they came to take her I told them to take care of my little girl. She mouthed back to me, "I will always be your little girl." It was so sweet. Then she mouthed to tell her dad the same thing. While she was gone I called and told John. He said it made his day. I am glad something did.
The results are in. Nicole's liver is humongous. It extends clear to her left side and down past her right iliac crest. About 3 times the size is should be. No wonder she is experiencing stomach pain, her blood not clotting and a distended abdomen. As well as very yellow eyes.
Her liver is not producing the product needed to make her blood clot. So to help her blood clot they had to give her 8 units of fresh / frozen plasma. They ordered tests to try and find out why her liver is so huge. One possibility is hepatitis. There are other possibilities. We will just have to wait until the test results come back and then make a plan on how to proceed.
Christian came to the hospital today to have lunch with me. It was so nice to spend that time with him. It seems as though I don't ever see him although I do see him a few times a week. I try to talk to him each day for a few minutes just to check in.
As they are getting ready to take Nicole to surgery I called John. Nicole wanted to hear his voice and to let him know she loved him. Even though she couldn't physically tell him she wanted him to know. He also told her he loved her and called her Nikki, Nikki, Timbo, No so Rimbo, Oooh Mauh Muchi, Gumma, Gumma Guchi. She smiled. We prayed with her and John hung up.
I just laid my head next to hers and stroked her hair. I told her how proud I was of her and how much I loved her. I told her things I don't think I had ever told her before. Tears streamed down my face while I just held her hand. Wanting to be close. Wanting to hold her. They came into take her and I just wanted them to go away for 5 more minutes. They wheeled her out and I inwardly prayed for peace. As I started to leave the unit to walk while she was in surgery, Nicole's nurse Shawn followed me out. He touched my arm and asked if I was OK. He, of all people, has known how I have felt. He gave me comforting words. I know that Heavenly Father sent him to me at that moment to give me peace.
When she had surgery this afternoon Nicole's doctor was relieved that her blood clotted better than they thought it would. It was a problem but not as much as they had anticipated. I was so relieved. The doctors laid cadaver skin on Nicole's back to hopefully promote healing but also to lessen the pain she is feeling. Hopefully it won't do its job to well. Just enough to do some healing but not too much. We need that skin for another graph.
Nicole is still not breathing on her own.
Wednesday, September 16, 2009
When I arrived at the unit Nicole was resting in bed fairly comfortably. She did go to wound care today mostly so the doctor could really see what was still happening as well as what is our next move. Well, the next move is surgery tomorrow. Dr. Morris will clean up the wounds that are not healing on her backside. While there he will lay homographs on all that area. That is good and bad. Good that it should cut down on the pain and hopefully help to get that area to heal itself. Bad because we don't want the homograph to do too good a job. We don't want the under layer to integrate itself into the wound so the body starts to heal into it. If that happens they won't be able to use that area again for donor sites. There really isn't much more area to take donor from if we loose that area. But something has to be done do help her back heal. We will just pray for the homograph to do the job but not too good of job.
Nicole had another surgery today. Dr. Shen put in a central line and an ART line. There is so much going on today I feel like it is day one all over again. Nicole has 12 bags hanging. She is not feeding right now. She is sepsis as well as acidosis. They are watching her quite close. When I got here today she was on a vent but only about 40% oxygen. Now the vent is breathing for her.
Nicole has had albumin times 3 plus 4 bags of Lactated ringers. She has minimal urine output. One of the reasons for the ART line is to help figure out why she has no urine. Where is all that fluid? Why is it trapped? Why are here pipes dilating and not getting rid of the fluid?
So much going on and no answers.
When she awakens she will be sad to not be able to talk, again. She will be starting all over when the trach comes out. No ice, no water, NO APPLESAUCE! Sad for her.
What a wake up call. My heart is racing. I know this can't be good.
"I wouldn't be calling you if it were not an emergency. Nicole is being taken into surgery as we speak. We think she has had a silent aspiration. She is having respiratory distress. Since 10pm last night I have been watching her very closely and now have determined there is no alternative but to try to insert another trach. Nicole needs a clear airway and at this point she doesn't have one. She has pneumonia also."
Oh no! This is certainly what we don't need.
"I will do my best to dilate her trachea to be able to insert a tube but if I can't do that I will need to reinsert a tube into her mouth. She will need to be put back on the vent. I will do my best. I will call you when we are finish."
I have great faith in Dr. Morris. I know he is amazing. I am grateful for him.
"Okay, Call me when you are done."
As I relay this inforamtion to John my stomach fells sick. Sick for Nicole but also sick for John that he is unable to be there. I need to call Christian but I will wait a while longer until I have more information.
Tuesday, September 15, 2009
So much going on with Nicole today. Good and not so good. PT went better today it seems. She walked some and had no complications with her breathing. I was happy to hear that. Wound care went well although her infections are not improving nor is her back healing as well as they want it to. The nurse told me they are trying some other product. It looks to me like they have tried many products. I hope they don't run out of things to try before she is healed.
More blood today. I think we are up to about 110 blood transfusions. An to think I thought 5 was a lot.
Nicole's eye have been looking quite yellow the past several days. I brought it to Dr. Shen's attention but he didn't seem to think that there was anything to worry about. Today Nicole's nurse brought it up to Dr. Morris as well as her urine is so dark and so Dr. Morris wants to have some tests done to see why. I am grateful to Nicole's nurses who seem to be on her side.
Dr. Morris said today Nicole is still critical. He did upgrade her from 50/50 to 60/40. Well that is a bright spot.
Nicole is disoriented again today. When I tried to talked to her shew as slurring her words so much that I couldn't understand a word she was saying. She didn't remember who her nurse was and kept calling him wrong name.
I will be glad to get there tomorrow. I know they are capable but there is nothing like a parent advocating for their child.
Tonight John and I are going out to dinner with friends. It will ba great to talk and have fun with them. Then a quite last night at home with John. Gosh, I love him. he is my strength, my rock, my go to guy.
Monday, September 14, 2009
Christian has brought to me a light that shines deep in my soul. His smile lightens me from the inside out. Always had. One day I took him to school. It was elementary. You know how older kids get to the point where they don't want their friends to see them kissing their mothers. Well, he was getting out of the car. He kissed me and he started to get out. I gently touched his arm and he looked back at me. I asked him for an extra kiss that day explaining that one day he wouldn't want to kiss his mother. Christian grabbed me around the neck and tightly gave me a squeeze and a kiss. Then he took my face in his hands and looked me in the eye. He smiled and said, "Don't worry mom, I will kiss you all the days of my life." Man I love him.
Christian is a gentle giant. His quiet demeanor and his seemingly endless love for others is a gift.
Nicole on the other hand is not a quiet thing. She is a thought provoking girl. She looks at life differently. Mostly because she is different. She doesn't learn like others, she doesn't think like others. She is her own unique self governed by a light inside. Don't get me wrong. She doesn't' always Choose The Right. But she does choose to have God in her life. To know her Savior and to follow His teaching to the best of her capability.
One thing I have learned as a parent is we all make mistakes. We all learn differently. We all can only do the best we can with the knowledge that we have at the time. Wouldn't it be nice to just have all the knowledge we need to be able to accomplish all. Well maybe it would be nice but look at all we would miss out on. GROWTH is what we would miss out on. Look back on all the experiences you wouldn't have had without mistakes you made. I am grateful for the mistakes I have made because it makes me a better person.
Today Nicole went to PT. She was doing well until her breathing was erratic and labored. They took her straight back to her room and laid her down. It subsided fairly quickly but she had to have wound care in bed and PT was finished in bed as well as PT this afternoon. She also has been extra sleepy for two days. She arouse pretty well but falls right back to sleep.
If I was in her shoes I wold want to sleep all the time.
Dr. Morris said we couldn't use the Cold Laser after all. I am not sure what is going on there but you can bet I will be talking to him right when I get back. I don't get it.
Sunday, September 13, 2009
John's nephew is blessing his baby this morning at a student ward at the "U". It is right on the way out of town and we are stopping for John to participate in that wonderful event. Thanks John and Alicia for including us in your special day. We left right after as it is a 16 hour drive and it will be like 3am when we get to Wichita.
I cried all the way to the blessing and while there. I am such a baby. I didn't want to leave Nicole but I knew I need to be in Wichita to finish some work there. I hope I can get it all done in the allotted amount of time.....48 hours. I will be running around like a CRAZY woman.
As we start up Parley's Canyon we see the brilliant auburn's, golds and flaming oranges of the trees starting to turn in preparation for winter. When I return in a few days the mountains will lit up. It won't take long before the Wasatch front will be on fire. The hues are showing off already. The show is beginning. I don't know why people think Stowe, VT is the place to see the fall colors. It is equally awe inspiring here.
The road is long to KS. We have traveled it too many times to count. I wish I could figure out how many miles we have driven on these roads. We have our favorite places to stop. We know exactly how far we can get from station to station. We know the cleanest bathrooms (a plus) and where the rest stops are. We can even tell you if the welcome center is worth the stop or what road side attractions you should just drive on by and not have a second thought about it.
i tired to call the unit several ties today to talk to Sweet Nicole but each time I got the same response; She is sleeping. Well I guess that is good but I miss telling her about what We are seeing along the way. i was told that her grandmother was there sitting with her. That is John's mom. We call her Grammy. I bet Nicole loved the visit but would have loved it more if she was awake. Thanks for sitting with Nicole today.
Saturday, September 12, 2009
Along with the infections again, she will be getting 2-3 units of blood today. Blood pressure way down again. I hope the blood transfusions will help.
Nicole and I are going to go for a stroll. She will be in the cardiac chair again. I like it much better than the wheel chair. It gives her more neck support. I am going to take Nicole out to the garden for sunshine therapy and then to the cafeteria for a slushie. As you know Nicole has been able to have nectar thick "food". I wouldn't really call it food as it is like ice cream, slushies, Italian ice, pudding. Although they did bring her potato soup, which looked more like cream gravy. I did taste it and it was pretty good. there is also a can of V-8. Certainly not my favorite but any nutrients will do.
John and I are driving to Wichita tomorrow. We are always so crazy busy the day before we go anywhere. You would think that since we have done that drive a hundred times that getting ready would be a snap. But NOOO. It always takes so long. We have so many things to pack up. All the clinic items to take back as well as all the other things John brought. I think this time he has more things because he needed things for the reunion last weekend.
We are always so busy crazy the day before we go somewhere. Today is no exception. Hospital time, helping John's mom unload boxes and move stuff around, neighborhood block party, adult stake conference, football game, pack up our stuff and load the van. Then, tomorrow on our way out of town we will attend church with John's nephew and wife, John and Alicia to participate in the blessing of there son Samuel. What a great thing that will be. Then off to Wichita.
Friday, September 11, 2009
I love the morning time. The air has a slight breeze. The crispness draws me outside. I love to fill my lungs with sweet mountain air. Unfortunately the valley is being filled up with pollution from California. I hope one day the valleys don't look like L.A. As I look out toward Utah Lake the sun shimmers across the lake. It looks like gem stones dancing. Beautiful!
I love working in the clinic with John. I looked foreword to each day because I knew not only was I able to see him all day (well, I could go look in the window of the room he was in) but we also ate lunch together, drove to and from work and at anytime I could see his smile. Gotta love that! Since I have been in Utah I have missed that. I miss waking up to him, going to the clinic and just being able to spend all that time together. Some people don't want to do that with their spouse. I don't get it. They married them, why wouldn't they want to spend all that time with them.
It is kind of hectic at the Utah clinic because it is just the two of us. He does the "magic" and I do everything else. Except when I get busy with the phone or therapies, then he does his own notes and all that. He is so patient with me when other duties take me out of the room. I know it is hard to "fend" for himself, to do it all. Plus I LOVE talking to the patients and finding out their stories. That is one of the best perks. I miss the Kansas stories, too.
Yesterday our friends from Kansas, Amber and Preston, who moved to Ogden, came to see John. Man, it was good to see them. I actually have seen them a few times but John hasn't seen them since they moved and that has been about 5 years. John was saying, "It seems like yesterday that we saw them." Amber said, "When I heard his voice it was like no time at all had gone by. I felt like I should be in the room with him charting." So fun.
Nicole had a fairly good day. Wound care went fairly well and her back is another tiny bit better. She also walked again today about 20 feet. Every day she can walk will make her that much stronger. She has a team of interns that are following her progress. There are 3 of them. They chart her progress and then report on it. I didn't even know that was happening until yesterday. Either I had so many other things going on in my head or they came when I was not there.
Christian is off today. Not many of those days. John and I are spending the evening with him. I know this is hard on him especially since I spend so much time at the unit with Nicole. He says its okay but I am sure he would like some time too. We are off to see G.I Joe.
Thursday, September 10, 2009
Her therapists wanted her to walk today. She didn't want to because both of her heels have bed sores on them and they have now broken open and bleed. So now when she puts pressure on them they break open again and start the cycle all over. Her pain level was so high she only got about 5 feet. John has never seen her walk before. It was pure joy.
Wound care was my priority. I wanted to see how her back was. Well I can say it is a tiny bit better. Still bleeding a lot and still very raw but there was slight improvement. We keeping praying that the doctors will let us use the Cold Laser. Even with what they are doing the laser would speed up the process 10 fold.
Nicole did walk about 20 feet back from wound care. It was a lot easier. We attribute it to the nurses taking out all the staples holding the homographs. And maybe the warm water warming up her muscles.
Silently we walked hand in hand out of the unit. John, is quietly contemplating. His heart is wrenched into anguish. I can see it written all over his face. He was completely worn out. When he speaks it is at first so quiet I can hardly hear him. "I don't know how you do it day in and day out. I am wrung out." I say in return, "I do it out of love, for her and you and Christian."
It is true. The love I have for them is what gets me through as well as knowing God is there with me. To help me and show me the way. The way meaning the next step. I wish it was the way as in, "here is the end of the path and here are the steps to get you there." But no. It is, "Here is the path. There are mile markers on the way to show that you are on the right path. It may get dark, there will be many turns, boulders on the path, sometimes thorny bushes. Keep going. You will see the way. If you but trust in me." I still have peace that which ever way the path leads that is the plan for Nicole.
Nicole's home teacher mowed it one time. It was so awesome. I am grateful he saw something that was needed and did it.
Well, we were getting kind of shabby again and I was going to borrow my friends mower but we could never coordinate the exchange. Then John decided when he came this month he would bring our mower to Lehi and he would just have the riding one.
When we got back from Antimony on Monday someone had mowed our lawn. WOW! What a nice surprise. I wish I knew who it was so I could thank them. If anyone knows please let me know or if you are reading this, please tell me. I want you to know I am grateful for your kindness and service. THANK YOU! It was a huge thing for me.
Wednesday, September 9, 2009
Wound care was mostly uneventful. We were hoping there would be some change. Last night during wound care they put half acticote and half BPL to see what would be better, if a change could be seen. Neither produced a significant change. So frustrating. Now they are going to change her every 4 hours and see if that helps.
Yesterday Nicole said her heels really hurt. Today she has bleeding bed sores on her heels form the skin breaking down. If it is not one thing it is another. Why can't one thing heal before something else comes around.
It was so fun to be with her tonight. Her personality was shining through. I had given her a taste of some ice cream. She wanted to hold the spoon. When I reached out to take it from her she pulled it back. I thought she wasn't done until she did it again. I could see she was playing with me. So cute.
Nicole's voice is getting a little stronger. It is squeaky but cute. I know she gets frustrated when she runs out of air and we can't understand her. I got real good at reading lips, I hope I get good at reading air.
Fatigue is catching up to me. Too many long days and nights. I knew fatigue would find me I was just hoping it wouldn't be for several more weeks.
Tuesday, September 8, 2009
It seems like each day presents new challenges. Today, Nicole refused her wound care. She is in so much pain with the areas on her back and buttocks the thought of having that area taken down and wash was just too much for her. I asked to speak to Dr. Morris and a few minutes later he came in. I sure like him. He gave us quite an extensive update. We hadn't talked with him in weeks. He started off with the bad. (not everything is going to be in here) Wound care didn't happen, which we already knew. He said he had come in earlier and talked with Nicole about how important wound care was. He told us that if you don't get wound care each day that infection can take over in that short time and she may loose all the graft or worse she may not be able to fight the infections because they are too bad. I don't know if that was a scare tactic but my eyes were burning. He did offer Nicole for her to have wound care bedside tonight with us there. She said she would.
He reminded Nicole that she is past her 2nd anniversary. (2 months) 66 days sounds long but I think 2 months sounds very long. She is not out of the woods yet. She still has quite a road ahead of her. Her back and buttocks are not progressing as they would like. They tried this new stuff on her they thought would help. It is foam that protects the area and has silver in it to help with infection but it is supposed to wick away the moisture so it will heal faster. WELL....when it was taken off the other day it was too moist. It didn't do what it was supposed to and it just made a mess.
I asked Dr. Morris, "Since the 'experimental' foam was used on Nicole and it failed, what would it hurt to use our cold laser on Nicole. At least it is proven. It may not have been used in this hospital but it is being used in other hospitals for wound care but more importantly burns." He just looked at me. I thought for sure he was going to say no like the did before. This time he said he would look at the information John had given them and then make a decision. SO.....for everyone reading this. We need your prayers. Please pray for the doctors who will be reviewing the information on the cold laser to find the information credible and see the facts behind the research so that we can use it on Nicole. We have used it on many patients and have had great results. Many of you have had Cold Laser Therapy. You know what it can do. Send those happy healng thoughts out to the doctors.
The MRSA on her face and neck has also spread and they are going after that with a new tactic.
A few good things are, even though she is weak she still is able to participate in PT. Nicole is also able to eat things that are nectar thick. So I brought her a cream slush from sonic. ORANGE of course. It tastes like a creamcycle. She only can have a few bites at a time so that will last for quite a while. She tried mashed potatoes tonight and they got stuck in her throat. No bueno.
John left for a while to help his family unload the moving truck at Janet's new home. While he was gone we did wound care. The nurses all tried so hard to be gentle but there is no way around what they have to do. Even for all the gentleness the pain is so great. All I can do is hold her hand and stroke her head. Her little cries are like a little kitten crying for its mother. I want to ease her pain but but I can't. I can't do anything. I feel so helpless. I want to be able to kiss all the hurt away just like when she was little. Remember when your mothers kiss made everything better. You just knew that if you were hurt and you went to your mom she would kiss it better and off you would go to play like it never happened. Why can't I do that.
My sister had a magic washcloth for her kids. When they would fall down and get a scrap she would get out the magic wash cloth. It was black in color so when she would clean them up they wouldn't be able to see the blood. They were not scared and all was well. I need a magic washcloth. One that not only made it so we can't see the blood but one that will make the pain go away.
After John was finished unloading the truck he came back to the hospital with his sister Anne and her husband Rich. I think they unloaded that truck in record time. He was only gone 3 hours and it is about a 20 minute drive each way. When they arrived we were doing wound care so they couldn't come in right away. Well John could and he did. I was glad he got there when he did. He was able to see what was going on and what was not progressing. Her trunk looks really great by the way.
Rich and Anne visited with Nicole for a few minutes and then John and Rich gave her a blessing. Nicole had requested one earlier. I was so glad they were here. The blessing Rich gave her was beautiful. It gave me such strength and I know it will give Nicole the same now and for time to come. Thank you so much for taking the time to come up tonight. Soon after they left Nicole was able to sleep peacefully. I hope her night goes well.
On the way home my emotions are right at the surface. I don't know if I am making any sense. I am trying to explain to John what I am feeling and it is so jumbled. He is so patient with me. He was going to let me stay at the hospital tonight. Now that is love, not only for me but for her. Mostly because John would have had to do clinic by himself. Not an easy feat. But I feel good about going home tonight. I will see her tomorrow.
There is always some sort of ping pong going on. Round robin or tournaments. Christian and Celia along with Becca and Taylor had fun playing.
Sunday after the family devotional we took a couple of four wheelers out for a ride to Mt. Dutton. If you have never been to Antimony, UT I recommend a trip. It is beautiful. Not far from Otter Creek Res on the North and Bryce Canyon on the South. We actually didn't get all the way there but it was fun anyway. When we reached the top we could see the Antimony Valley. What a sight.
There is always a craft time. You know to keep the little ones busy. I think this year there were alot of "big" ones busy too. There were swords to be made, princess crowns also. I saw mascarede masks being worn. But thebeading table was where the adult action was. Necklaces, bracelets and earrings were being churned out. SO fun sitting there talking and helping younger ones be creative. Jenn, thanks so much for putting so much thought into the crafts. Wish you were there to see how much fun everyone was having.
Monday, September 7, 2009
Christian, Celia and I left about 9am. With the Labor Day traffic I wanted to get an early start so as not to get caught waiting on the freeway in the hot sun. Home, Hot Shower then off to the unit. Little things like a hot shower make my day so much nicer.
Before I left the ranch I called the unit to get an update on Nicole. She had a few complications last night but today seemed some better in that regard. When they took off all her bandages today in wound care they found more psuedomonas. Can't we ever get a break.
Also the MRSA which was under control several days ago is now on about 30% of her face. Shaun, her nurse today, is jumping on that. He is very efficient and really keeps on top of that kind of stuff.
I was so happy to see Nicole when I came into the unit today. I have only seen her for 1 hour in 8 days. Unfortunately she has been throwing up today which makes for a tough day. I'm sure others can relate to this. I know when I am sick I don't want anyone one to touch me or even talk to me. She is not that fortunate to be able to be left alone. People in and out all day and PT doesn't stop even when you are throwing up. They just pause until it is over then continues on. So sad.
Nicole is finally wearing her Jobst gloves. When they came in her hands were too swollen to get them on so we had to wait. They had to wrap her hands with special material and in a special way to help the edema go away. We are happy her hands fit in the gloves now. That will help a lot.
Many family and friends have sent their well wishes to us. We in turn want to send well wishes your way. We pray for your families and hope you are all well. Even if we don't know you. We continue to pray that God will bless you and yours. I am so grateful for a merciful God. One that knows us individually. He knows what we can handle and he won't give us more than that. I know it may seem like I can't handle one more thing but I guess HE know me better than I do. The lessons we have learned are priceless. No amount of schooling could have given me the experience, patience nor the fortitude that I now have.
Today our families had a special devotional about families. I love to hear all the stories of John's ancestors. 2 cousins spoke and they both told stories of the man whom Christian is named after. Christian Christiansen Brown. I was glad that Christian was there to hear those stories. So faith promoting.
On another post I will go on and on about the reunion with pictures and everything.
Nicole had a fairly rough day. Her pain was hard to control. It seemed that no matter what the staff did it didn't get better. Turning her or meds didn't help. I wish I would have been there to help her through that.
My parents have been troopers to help me out so much while I have been gone. They come each day and sit with her, read to her and just try to be supportive. Nice to know she is not alone.
Saturday, September 5, 2009
She will not be able to get out of bed for a few days now that she has had homographs put on. We are hoping a praying they "take". Take meaning her body we act like it is taking so when the real graphs are laid her body won't reject it. Not a lot of skin left so we don't want any rejecting to be happening.
I am so torn this weekend. I look foreword to John's family reunion for 2 years. It is a wonderful time to get together, renew cousin friendships and just catch up. There are just the right amount of activities for everyone of all ages. And, down time too for visiting. I don't know what we will do if the day ever come when this is not held.
But on the other hand I want to be there for Nicole. She was quite sad last night when I had to tell her the family reunion was this weekend....and she wasn't going. Many, many tears. John and I are taking many pictures so we can share all the activities with her.
I love that John comes from a large family and extended family. I told him a few months ago that I hoped if anything happened to him his family would still let me play with them. He just laughed. Well, I do hope for that.
Many well wishes and prayers offered for Nicole from this extended clan. Love to you all and thank you.
Friday, September 4, 2009
Nicole's surgery was today. We wanted to be here when she came out but that didn't happen. The surgery went well. Dr. Morris was able to cover both legs and the rest of her left arm with cadaver skin. That should make the pain level less int eh next day or so. I hope that happens. The pain is very intense.
Nicole's back and buttocks is not doing that great. Her back was doing ok but over the last few days has gone down hill. Laying on her back and buttocks has made it raw and not heal as it should. The doctors are trying a new thing. It is experimental technology that will hopefully help her backside heal.
When I get a scrap or a paper cut I think, "Holy smokes that hurts so much." I can't imagine what pain this is. Even a small flat iron burn hurts for so many days.
When John and I arrived here today Nicole was so happy to see us both. My parents have been here each day to visit and be here for Nicole. When they were leaving today Nicole said, "Thank you so, so, so, so, so, (about 30 times) much for being here when my mom was gone." I am glad she liked them to be there. I don't know sometimes how she will be with people there. Sometimes she just doesn't want others there.
Tonight John and I will be getting ready to go to Antimony, UT for the Lundgreen Family Reunion. (that is on John's side) We have been having this reunion for 24 years. The first one Christian was just 3 weeks old. It is something we look so foreword to. It is held at the Rockin R Ranch.
Our Carlston family is in charge of the whole weekend this year. We have lots of activities planned and several usual things like snow cones and cotton candy, pinatas and pennies in the hay, water balloon toss and potato guns.
I may not update for a few days because I don't know if there is Internet access. Just know if there is no post til Monday all is still well.
Thursday, September 3, 2009
I know that the Physical Therapists in the burn unit only want what best for Nicole but I need an education. I can understand the stretching and moving being a benefit to her but what I don't understand is how much they push. She has come back from PT two days in a row crying. Nicole FIRED her PT guy today 3 times. I guess he didn't get the hint. Not being there everyday to be her advocate has wrenched my heart. I am not afraid to speak my mind and get in someone face if I need to. I called to find out what was going on and to vent my frustrations to her nurse. I hardly could tell her what was on my mind before she chimed in and told me she was unhappy with Nicole's pain level today and was going to talk to her nurse about it. YEAH!. I didn't need to be the momma bear after all.
I am ready to leave here soon. I know it is a long drive but that is MY time with John. I actually love the drive. We have each other captive. We talk, laugh, read together, sing. I rub his back and he rubs mine. This is why I love working with John everyday. Total together time.