Nicole has had a somewhat better day. She is more alert then she was yesterday.
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.
Wednesday, September 9, 2009
Tuesday, September 8, 2009
Day 66
This week John is in town to treat patients at our clinic in Lehi. He loves his patients and seeing their progression. He always says, "This never seems like 'work'. I love doing what I am doing every single day." I bet everyone wishes they could say that. After clinic we were able to go to the unit and see Nicole and get updated on the day.
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.
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.
Lundgreen Reunion 2009
Our family reunion was so much fun this year. I hope I don't sound bias since our family was in charge. We always have a riot no matter who is in charge. We started off by participating in a service project benefiting the ranch. We transplanted trees and picked up trash. I heard there was something like 80 people who where there.
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.
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.
The one thing I look forward to above all else is when we get together on Sunday night and sing with Uncle Burns and Aunt Mona. We sing songs like the long tall texan, pass the udder udder and hole in the bottom of the sea. Then they both sing songs to us. They sing so well and their harmony is awesome. John has video taped the singing every year for about 20 years. I feel lucky to have those tapes. I wish I had those recordings on a cd.
I just want to thanks all who came and all who were the planners and people who carried out the plan. Anne, Brock, Janet, Jenn, Joe, John, Kathryn, Ladd, Michelle, Rich, Richard, Sarah, Thane (in alpha order). (and the nieces and nephews to numerous to name at this time) You guys are awesome.
Each year we have our traditional old fashioned games we play. Pennies in the hay, gunny sack races, balloon toss, float the dope as well as others. I wish I had some pictures of the games. They are always fun to watch and participate in. Snow cones are always after lawn games. How fun is that?
Our Saturday night activity was a sock hop. Poodle skirts, rolled up jeans and white t-shirts, leather jackets. We had great music and great dancers. my brother-in-law Rich brought his lights and camera for photo ops. A cousin brought his motorcycle and we were able to use it as a prop for pictures. What a hit.
The malt shop and penny candy went over big. We had root beer barrels, double bubble, Chiclets, licorice whips, tootsie rolls and Beemans gum. All to bought with a penny.
Our malt shop was more like a sundae shop but the point is...we all got ice cream! Every topping you could imagine was there. My favorite was malt, brownies and Oreo cookies crunched up. Christian and Celia scooped the ice cream. I think they had fun. Thanks for your help guys.
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.
The one thing I look forward to above all else is when we get together on Sunday night and sing with Uncle Burns and Aunt Mona. We sing songs like the long tall texan, pass the udder udder and hole in the bottom of the sea. Then they both sing songs to us. They sing so well and their harmony is awesome. John has video taped the singing every year for about 20 years. I feel lucky to have those tapes. I wish I had those recordings on a cd. 
I just want to thanks all who came and all who were the planners and people who carried out the plan. Anne, Brock, Janet, Jenn, Joe, John, Kathryn, Ladd, Michelle, Rich, Richard, Sarah, Thane (in alpha order). (and the nieces and nephews to numerous to name at this time) You guys are awesome.Monday, September 7, 2009
Day 65
I left fairly early from the ranch today so I could spend as much time with Nicole as possible. John went to his mothers in Koosharem with his siblings to load the moving van. Today is moving day for her. She will be living in SLC to be closer to her kids and grand kids. I am sure everyone will love having her closer and they won't worry about her being so far away.
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.
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.
Day 64
Today is Sunday Sept 6. John, Christian, Celia and Angi are all at the Rockin' R Ranch. A little update on the reunion and then on to Nicole. Last night we had a sock hop. It was such a hit. 50's music, poodle skirts, leather jackets, malt shoppe, Penny candy. What more could you want.
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.
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
Day 63
Well it is another RED LETTER DAY! Speech therapy came in today and worked with Nicole's swallowing. She is ready now to start eating. Well eating is such a diverse word. She can have creamsicles. Oh, she is so excited. I wish I was there to see her eyes light up. Nicole's nurse called me on the phone this morning so Nicole could tell me.
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.
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
Day 62
Well today is day 62. Already past the two month mark. John and I drove all night to come to the unit today. We left kind of late but we hit everything imaginable. Rain. very dense fog, road construction at every turn. It was slow going. On top of that, for some reason we only got 250 miles to the tank instead of 350. Needless to say it felt like we were stopping to get gas all the time.
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.
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.
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