Whoever thought up the word widow, is awful. What a horrible word "widow" is! It makes me feel like I am 80 years old. But, it is the title that I have now been given by society.
I have been a widow for one week now. And I survived. I will say that the first 72 hours were the WORST to get through. After those first three days, I started to think a little clearer and actually be able to focus on some things.
I still have a hard time being alone and I sleep with the light on. But, atleast I am able to get out of bed in the morning and face the day. I cannot eat in the mornings though or I just throw it right back up. I have no appetite and no matter how much I sleep at night I am still exhausted. But, I would assume these are all normal things for just losing a spouse.
This past Saturday we went to the Gila Valley to pick out the cemetery where Kameron will be buried. As soon as we started walking around the Central Cemetery I KNEW that is where he should be buried. The view is beautiful, it is surrounded by mountains and just down the hill is the Gila Valley Temple. It is so perfect.
Everything is coming together for the funeral and I am so pleased with how it looks. It will be nice to have Friday over with, it's going to be a long, emotional day! But, we are hoping to make some good memories as well.
Today I went to the temple and I was a little nervous about going. Maybe because I didn't really know what to expect? My mind was all over the place and I had a really hard time concentrating but, as I got into the Celestial Room, I had an overwhelming feeling of peace and comfort. My life is in the hands of our Heavenly Father. He is directing my path and whatever is placed in my path can be conquered with the help of Him. It doesn't make me miss Kameron less and it doesn't take away my lonely feeling but, it does give me the reassurance that I need to make it through each day. He is not going to leave me standing alone on the side of the road.
It was a good day but it was exhausting, it sure is a long drive with a two year old!!! But, he's a trooper. Thank heavens for temples and for the blessings that we receive there.
Only one more day until the funeral ... I cannot wait to have Friday over with.
Wednesday, August 26, 2009
Whoever thought up the word widow, is awful. What a horrible word "widow" is! It makes me feel like I am 80 years old. But, it is the title that I have now been given by society.
Prepared just for you by Our Ohana at 11:40 PM
Friday, August 21, 2009
Today was such a LONG day. This morning we headed to the funeral home and met with them to get everything squared away. We picked out Kam's casket and it's a beautiful pine wood casket, that costs WAY too much money. We scheduled the times for everything and squared away all of that. We filled out paper work and choked a little bit when we saw the final price. I think it's a little unfair that putting someone in the ground costs so much money. But, the hardest part of all of that is over with. I started crying when he started to fill out the death certificate and asked me how to spell Kam's name ... and then I think I got over it when I went into shock over the price of the caskets. Then we sat in the room and joked together, Kameron is hating having to see us mourn right now - he wants us to continue living our lives like we did before, full of love and laughter.
Then, we met with the Bishop to figure out the program for the services. I feel really good about what we have outlined. I know that Kameron will be happy with it. And I know that if it goes over an hour, Kam's going to get impatient. ;)
I left for a bit this afternoon and went to the church baseball fields and let some emotions out. It was a hard, emotional day. I needed some answers and some comfort and I am feeling very comforted right now. I know that tomorrow morning I will have to wake up and pray for that same strength and comfort that I feel right now. It's funny how each morning when I wake up I feel sick to my stomach about going through another day and I'm emotional and exhausted and as the day goes on I feel more and more comforted with each prayer and each experience that I have.
I know that lots of people look at me and see strength and lots of faith but, let me tell you that when I look in the mirror I don't always see that. I see a little girl who is being broken down by tragedy and I am constantly lifted up by YOUR prayers, love, support, comments, emails, texts, phone calls (even though I never answer them), everything ... YOU are the strength that gets me through this. I take your strength and hold onto it because that is what gets me through my days.
Each day will get a little easier and each day I will experience new and different emotions and thoughts.
And for those who want to know:
Kameron's funeral services will be as follows:
Funeral: Friday, August 28th
Sierra Vista, AZ Stake Center (2100 Yaqui St. Sierra Vista, AZ 85650)
Graveside Services: Friday, August 28th
2:00 pm (roughly)
Thatcher, AZ (Cemetary TBD)
More information will follow as we work out all the little details. Love to you ALL. I can't do this without you!
Prepared just for you by Our Ohana at 10:25 PM
Thursday, August 20, 2009
Tuesday when I would talk to Kameron's doctor's and nurses they all said that Kameron had really taken a turn for the worse. He was on 3 blood pressure medications to keep his blood pressure elevated but, it continued to fall. His vent settings were at 100% but, his saturation continued to drop. I talked to the nurse Tuesday night and she said that he was very unresponsive and weak. We had a planned meeting with one of his doctors Wednesday morning so I was planning on heading up there.
When I called the hospital Wednesday morning his nurse said that he was a lot of the same. Low oxygen saturation and low blood pressure. I then talked to his pulmonologist who told me that I needed to come, and bring the family - he said, "it really doesn't look good right now."
I had the biggest knot in my stomach as I got ready to leave. On the drive, as soon as I passed the Border Patrol CheckPoint, I started praying. I was crying and praying and asking Heavenly Father to please not take my best friend! I can't do it without him. He is the best thing that has ever happened to me. After praying for those things, my prayers slowly turned to prayers of asking Him to follow through with his promises, the blessings that have been given throughout this, I asked Him to keep those promises. I knew that He would, and at the time, I was certain that those promises were to be fulfilled on earth.
As I got to the hopsital, my mom and brother were there, as we walked into the hospital room Kameron looked so awful. He had hardly any coloring left, he was completely unresponsive, the nurse told us that even though he has been on 3 blood pressure medications, they still haven't been able to get any type of blood pressure reading. His oxygen saturation levels were in the 30s & 40s. Over night his heart had gone into rapid heartbeat and then parts of his heart would stop working. The only thing going strong when I got to the hospital was his heartbeat. The nurse told us that this was Kameron's way of passing. She asked me if his heart was to stop if I wanted them to do CPR. At that time, I said yes. It only made sense to me, I thought he had some fight left in him.
I was angry. I was looking towards the heavens saying, "You PROMISED, You PROMISED! How could You do this to me?" I kept thinking that there would be a miracle, and Kameron would be fine. I was praying for one. And then, I heard a voice tell me, "He never said those promises were for earth." And then I knew. I couldn't go near him, I was in shock. I didn't cry, I didn't hold his hand. I didn't even say good-bye but, I know that doesn't matter because he was right there beside me through all of this.
And then, it happened. At around 10am Kameron coded. His nurse rushed in and did what I had told her to do, she hit the blue "code" button and the alarm sounded. At least 15 nurses rushed into Kameron's tiny room and his nurse started doing CPR. I started crying hysterically and his doctor came in a told me, "you don't want him to suffer like this, do you?" I looked to my mom, for answers but, it was all up to me. Then I looked at Kameron, the nurse pounding on his chest. I saw his heartrate climb to 84 and that gave me a glimmer of hope. But then I realized it's only because she was beating it for him and I knew there was nothing to be done. I yelled at them, through my tears, "JUST STOP! PLEASE STOP!" And that was it. A few tears were shed by the nurses and then Kameron's machines were turned off and the room cleared out.
I sat there in shock. He was gone and it seemed so impossible. I cried & cried until I had no tears left. I sat there and looked at his poor, sick body. I didn't even know what to do. I just sat there, numb. Nurses came in and paid their condolences and I numbly hugged each of them and thanked them for all they did, they really were a great team of nurses for Kameron. He had gotten the best care possible.
I sat in his room for awhile, checking my phone for Kara or Laurel to say they were there. I needed to talk to someone other than family - my family was grieving too and I just needed some support from someone who wasn't going through the same type of hurt. Art & Elena left occasionally to make or answer phone calls. Mom & Jesse were in and out of the room. And I just sat there, in disbelief that this is my life now. I thought of all the things that will change. I thought about what my days will be like now. I thought about how it will be possible to even make it day by day with out my husband's hand to hold. I thought about Kason, how would he handle all of this, what would I tell him?
I remember saying, "This isn't fair!" And it's not fair, at all, to any of us. But, we aren't in control of our lives and it isn't up to us to decide if things that happen to us are fair or not.
Then around 11:30, Kara said she was there. I rushed out of Kameron's room to go find Kara. While I was walking around looking for Kara, I got a text from Laurel saying she had just found out, word was starting to spread. When I found Kara, she ran towards me crying. I just cried and hugged her. She was saying, "I'm so sorry, Jami. I'm so sorry." And I cried. I let all of my emotions out. We went and sat in the chapel and cried.
We talked and cried and I remember saying, "What am I supposed to do? How can I do this without him?" I remember having such a heavy heart and almost a panic of what would happen with my life. I remember wondering if I would be able to give Kason the life he deserves and how I would be strong for him. Kara was so amazing to listen to me talk and cry and the things she said that helped me get to where I am now.
Mom and Jesse came in and asked if I wanted Kason with me. I told them, "Yes, I need his strength right now." They left to go pick up Kason from Thatcher. Kara and I walked outside. It was almost as if a burden was lifted from my shoulders and the realization came to me that Kameron is okay. He's not in an awful place, he is in the most amazing place anyone can go. He isn't hurting anymore. He isn't suffering. He is happy and he has all of his questions answered. He is the lucky one.
As we sat outside and I talked out my emotions, I realized that it is more important for him to be with Heavenly Father right now, he has missions in Heaven that need to be accomplished. I realized that this trial is about MY strength and MY faith and MY understanding of everything. So, I am okay with where Kameron is. I know where he is and I know that he has stood beside the Savior. I know that he will be our constant companion and watch over us and bless us from Heaven, probably more than he ever could have on earth.
When Laurel got there we just talked and hugged. Laurel and I agreed that Kameron is with Hannah now, Laurel's little girl. Laurel promised Kameron that if he took care of Hannah, that she would take care of Kason.
We walked back into the hospital, holding hands, and a nurse said that they had removed all of Kameron's tubes and lines. I went in with Laurel & Kara. The Spirit was so strong in his room. We sat down and they held my hands as I looked at Kameron. His body looked so peaceful sitting there in the bed. He wasn't fighting for breath, his organs weren't struggling to function, he was at peace. He had been healed, just like our Heavenly Father had promised. His mind was sharp, just like had been promised. He was there to fulfill his missions.
Laurel & Kara left and I layed my head on Kameron and held his hand, for the last time. I knew he was sitting there right beside me, wishing he could hold my hand through all of this. I told him that I knew he was in a better place and that he was happy. Then I begged him to never leave us. I cried through my words as I said, "Please Kameron, don't ever, ever, ever leave my side. I need you now, more than ever." And I know that he won't. He will continue to be a strength to me. After I felt like I had said everything I could, I left.
I started to realize that things needed to be done. I called the funeral home and made arrangements for Kameron to be transported to Sierra Vista. The Habans and I spoke and discussed some concerns and "what to do's". And then, we all decided to leave. I kissed Kameron's cold head, told him I loved him, and that was it. The nurses made plans to transport Kameron to pathology. His body would finally be able to leave the place that caused him so much pain and suffering.
I found Laurel & Kara, who had been joined by Emily & Camille. We sat and talked, cried a few more tears. I remember at one point Laurel telling me that on Monday, when Kameron had cried and was squeezing my hand, that he knew he would be leaving me. His heart was hurting that he would have to leave this earth and leave me behind. He couldn't tell me and I remember asking him, "You know you're going to be okay, right?" He nodded his head yes. Little did I know that at that time, his idea of "okay" and mine, were two totally different things. I can just imagine his heart hurting for what he knew was about to happen and not being able to hold me and tell me that everything really would be alright. I know that it was Monday night that his Spirit left his body. I am so grateful I was not at the hospital on Tuesday to watch his body fight and suffer to stay alive. I am glad I wasn't there to see how awful it really was and that I was only there Wednesday morning to see him struggle for a little while. I know he was hanging on until we were able to be there. It wasn't even 30 minutes that we were there before he passed. He was always one to think of others and I am grateful that he did that for us.
While I was with friends, and had Kason with me, he asked me if we could go see Daddy. I just fell apart. This poor innocent little boy has no idea what has just happened. He was holding me tight, he knew I was hurting. I took him outside and told him that Daddy doesn't live with us anymore. Daddy went to go live with Heavenly Father and Jesus and he is up in heaven. Daddy is happy and healthy and he isn't sick anymore. I made sure Kason KNEW that his Daddy loves him very much, he always will, and he will always be with Kason. When I was finished Kason layed his head on my shoulder and hugged me tight. I don't know how much he understands but, I will always make sure that he knows what an amazing daddy he has and how much love he has for him.
After leaving the hospital, my friends and I went to go get something to eat. I was so numb still. I would being sitting there totally fine and then start crying because something I saw would remind me of Kameron. The baseball game on tv, a happy couple out on a date, it was so hard to not look around and see Kameron everywhere.
Coming home I was sick to my stomach. I knew that here, I would have to face reality. Each day would be difficult to even get out of bed. Last night, I struggled to fall asleep. I asked Heavenly Father for the strength I need to make it through this. As I layed my head on my pillow, I felt Kameron's hand on my shoulder, strengthening me and holding me until I fell asleep.
This morning, I haven't stopped crying. It's hard to imagine that he really is gone, and it wasn't just an awful dream. I have to live the rest of my life without my best friend here on earth. It is so scary to think about my future. I am scared for Kason. I am sick to my stomach over everything I am going to have to face. I know that now, more than ever, I am going to need my faith to get me through this. I need faith each morning to get out of bed and be a mom to my little, Kason. I will need faith to make decisions for me and Kason. I can't rely on Kameron anymore to turn to and ask his opinion - it's all up to me.
I am grateful for our patriarchal blessings, they both mean more to me now then they ever have before. I am grateful, grateful, grateful for eternal families. I KNOW without a doubt in my mind that Kameron is in Heaven anxiously awaiting our return so that we can be together again. I know that he will be so busy up there. I am sure he is already working, he was never one to sit still and not do anything. I am grateful for the knowledge that we have, for temple ceremonies. I am so grateful we were sealed in the temple for time and all eternity. I know that I have my best friend still, I still have my husband, Kason still has his daddy, it's just going to be awhile before we can all hold each other again.
It hurts so bad to not have him here. I feel lost and lonely, but at the same time, I feel a peace in knowing the things that I know, about eternal families and life after death. Kameron wouldn't want me to live in fear of my future. The rest of my life is going to be lived for him. I will do everything I do so that I can be with him again. I am grateful that he has passed through the veil so that he no longer has to suffer each day. I remember praying once, a few months ago, for Kameron to just have his pain taken away. I can now be at peace knowing that he has no pain. I am grateful that he doesn't have to suffer on this earth with the mental disabilities that he would have had. I am just glad that he no longer has to fight.
I love Kameron with all of my heart. He is my world and my rock. He is such a strength to me and has taught me so much about who I am. I am grateful to have him in my life. I am excited for the future that awaits us in heaven, we have missions to serve and children to raise. Our blessings in heaven will get me through this difficult path on earth.
I am grateful for the love and support of each and every one of you. It means a lot to me and Kameron is grateful that there are people on earth that are caring for his wife and son. I will be relying on others for a long time to get me through this.
I send my love and appreciation to each of you. I cannot express this enough. Thank you, thank you, thank you from the bottom of my heart.
Prepared just for you by Our Ohana at 7:52 AM
Tuesday, August 18, 2009
It was such a rough day yesterday.
I cried a lot yesterday.
When the infectious disease doctor told me that the Valley Fever and the CMV are life threatening for him right now, I lost all hope that I had been given. I forgot the promises that have been made. I let Satan get between me and my faith. I allowed the doctor's to tell me Kameron's outcome instead of Heavenly Father.
But, today is a new day. I need to be the strong one again. I need to find the faith that wavered yesterday. I need to show our Heavenly Father that I am learning and growing through all of this. How will I do this? I'm not sure - especially when it seems like bad news is always just around the corner. But, I need to remember everything that has happened up to this point. This whole journey has been filled with miracles and I need to remember those.
So, today, I will get back on the horse and leave Satan in the dust, for he is the one who wants me to be miserable. Our Heavenly Father and our Savior - would never want my days to be filled with doubt and misery.
Here is to a new day, with new hope and stronger faith than before!
Prepared just for you by Our Ohana at 9:52 AM
Monday, August 17, 2009
SO ... I headed to Tucson this morning and when I got here Kameron's vent settings were up to 100% and his saturation levels were right at 90 or below. That's a step in the wrong direction!
His subcute air (under his skin) has gotten a lot worse too. There were also some issues with his breathing tube, it almost sounded like it was leaking. (It makes me wonder why they don't just get this trach thing over with?!). They weren't sure what was causing him to need so much extra oxygen.
Then, Cindy Hatch (and her daughter) and Kay Ellet came by and then we headed out to lunch at Olive Garden (thanks again ladies - it was very delicious!!). Right as we were leaving the infectious disease doctor called me and told me that they got the cultures from the gunk in his lungs and ... it's Valley Fever. Grrreat. The interesting part about all of this, is back in June, they had suspected that Kameron had Valley Fever. They had tested him for it and from what I remember it came back negative. But, apparently he has had it all along and it has decided to rear it's ugly little head now. So, all day the nurse has been fighting to get Kameron's oxygen saturation levels up.
The worst part is the combination of the Valley Fever with the CMV, is very dangerous for his lungs. His lungs have already taken a beating and to get this on top of it, they're going to be in rough shape. And, the medication that they give him for the Valley Fever can be toxic for his kidneys but, she said that they would rather take the risk since he is on dialysis. There is also some concern re: the combination of the Valley Fever drug and the amount of steroids he is on. I guess the steroids can make the medication affect his kidneys even more. BUT, if they lower his steroids then the lupus will just get worse. If it's not one thing - it's another.
The neurologists are kind of signing off of Kameron's case for now, there really isn't much that they can do for him right now. She did say that he is still making progress and the main thing she is noticing is weakness, which is consistent with the areas of his brain that were affected.
Hopefully soon they can get the trach put in, get his CMV and Valley Fever under control and get some serious progress going!
Prepared just for you by Our Ohana at 4:29 PM
I figured that since I spend all day with these people ... maybe you should get to know them too!
granted, this isn't everyone but, some of the nurses he has only had like one time.
Dr. Insell (Internal Medicine)
Dr. Jan/Dr. Walshaw (Renal)
Dr. Karl/Dr. Howe (Rheumatologist)
Dr. Nasif (Infectious Disease)
Graham: Working his way through medical school by being a tech. Lots of fun, jokes around with Kam when he's awake. Very friendly.
Jenn: The sweetest nurse here, I think. I could sit and talk to her for hours about, who knows what. She is such a sweetheart!
Prepared just for you by Our Ohana at 2:19 PM
Sunday, August 16, 2009
Yesterday, Dr. Hueng was back (yay!) he told us that he is very pleased with Kameron's progress. He had said that when he would check in with other doctors re: Kameron, he was getting discouraged because he was afraid Kameron was just going to be a vegetable! So, when he was at the hospital and checked on Kameron, he was so happy to see him awake and responding and even squeezing his hand. He said he was very pleased with how Kameron looked.
Matt & I were talking about this, and thought this might be the case. Dr. Hueng has seen Kameron since day 1 so he has know his best days and his worst days. The other pulmonologist that was there this past week, has never seen Kameron before, so he doesn't realized how much improvement we have seen. (That doesn't excuse some of the things he's said, which I am still a little bitter about, but I'll get over it!) So, I was glad to hear Dr. Hueng's encouraging words!
He showed me Kameron's CT Scan of his lungs and and x-ray. There are little pockets or cysts on his lungs that they did a culture of to make sure it's not Pneumocystis Pneumonia.
Today when I talked to Dr. Hueng he said that Kameron is looking really good from a lung stand point. The two main concerns right now are getting the trach in, which they will be doing this week, and getting a GI Doc to see Kameron about his liver. He wants to see if there is anything that can be done to help Kameron's bilirubin levels or if we just have to let his body run it's course and get the bilirubin out on it's own.
He also mentioned something about putting a feeding peg in. It is a feeding tube that goes right into his stomach from the outside. Then they can get the feeding tube out of his nose!
That's about it. I will be down there most of this week. Del Ann & Gary Haymore stopped by to see Kameron today and said that he seemed to recognize them and know who they were. I also want to remember that John Morril stopped by to see Kameron on Friday & awhile back (like several weeks), I remember Kameron telling me that Mike Goodman had stopped by to visit. We love having visitors! It breaks up the monotony of the day! :)
Prepared just for you by Our Ohana at 8:48 PM
Saturday, August 15, 2009
Friday, August 14, 2009
Thursday morning came and I dropped the Lil' Man off at a friends house and headed to Tucson. About 20 minutes into my trip, my mom calls and says that she felt like she needed to be in Tucson with me that day and she was on her way. I started wondering why she would have the prompting to be there - and it got me really nervous wondering what could be wrong. Then I remembered what I had noticed Wednesday, what if they were going to tell us that something was wrong with Kameron's brain? On the way down I was looking up "brain damage" on my phone. (don't tell on me :) But, it was hard to get much information because I didn't know what I was searching for. So, I get to the hospital and when I get to Kameron's room, the pulmonologist (not Dr. Hueng, I can't remember his name) pulls me out of Kameron's room and says;
This morning, I called the hospital and they still didn't have any reports from the MRI. So, I headed down there with about 200 knots in my stomach. I didn't want to talk to the doctors, I didn't want to talk to any nurses, I just wanted to avoid the hospital today. I wasn't sure what kind of news we were going to get. I kept praying that whatever the news was, that we could find a way to make it work. That I would be at peace with our future and that Kameron would be okay. I probably cried half of the way down there - I was just SO nervous about getting to the hospital.
So, we waited alllll day again. And in the mean time, the pulmonologist that had talked to me yesterday about Kameron's brain damage came in and told me that since Kameron is showing some progress, it looks like his case will be worth pursuing. I was like, "what?! did he really just say that to me?" I was a little taken back that a doctor would say that to the wife of the patient!!!
Anyways ... back on track. When the neurologist came tonight, she again confirmed that Kameron has these low density areas on his brain. She said that he has them on his; corpus callosum and the basal ganglia on either side of the corpus callosum. The basal ganglia has something to do with the transfer of information for coordination and movement. The corpus callosum is the bridge that sends information back and forth between our right brain and our left brain.
She said that there is no way to know how much damage has been done. It could be weeks before we know any of that. I asked her if the low density areas can repair themselves and she said that our brains usually don't regenerate but, they can relearn things. So, if something is affected, his brain will just figure out a new way to do it.
I asked her if his brain has been injured because of the lupus. She told us that our brains are so interesting, the way they react to things. So, there will never be any definate way to determine what caused the brain injury. It could be the lupus, his high blood pressure, lack of oxygen, a combination of all three ... who knows. So we will never know exactly what caused all of this to happen.
I realized on the way home how important it is that I continue to focus on all the little, positive things. Like the fact that he moved his left hand today, or that he moved his shoulder. I will lose all optimism if I focus on the negative things; like why won't he do this? or that?
So, we will see what happens. We will just have hope that each day he will have a little bit of improvement.
Sorry for the days hiatus ... I had alot on my mind!
Prepared just for you by Our Ohana at 9:53 PM
Thursday, August 13, 2009
Prepared just for you by Our Ohana at 3:48 PM
Wednesday, August 12, 2009
Yesterday they put Kameron on regular dialysis. It will go for 3-4 hours, 3 times a week. This will help his kidneys get back into the swing of things on their days off of dialysis.
This morning they had to put another chest tube in Kameron's left side. His pneumothorax was growing. But, the chest x-ray taken after they did the chest tube showed that his lung is expanded again. Because they had to do the chest tube his vent setting is at 60% and his oxygen level is at 97%. Today he has NO IV's running! They took him off of the TPN (IV Nutrients) and no medications are running. With the TPN off, this will help his liver enzymes decrease which will help clear out that ammonia and the sedative/paralytic.
And, when I talked to Kameron's nurse last night she said that Kameron would hardly open his eyes but, this morning when I talked to her she said that he will open his eyes when you ask him to and he will nod his head if you ask him questions! HOORAY! I wasn't planning on coming to Tucson today but, when I talked to his nurse, she asked him if he wanted me here and he nodded yes. So, I left Lil' Man with his uncles and headed down here. I can tell he is still really weak and doesn't have much energy to nod his head or open his eyes but, it's nice to have some sort of communication with him and know that he can at least hear what I am saying and comprehend it. It's all about the baby steps and the little bit of progress! I would much rather have a little progress each day then, lots of bad news each day!
Yay for hubby's being awake! :D
(after writing this post, I asked Kameron to wiggle his fingers and he did a teeny tiny bit!! (and when I say teeny tiny, that's what I mean! lol) Oh, Happy Day!)
Prepared just for you by Our Ohana at 1:35 PM
Tuesday, August 11, 2009
And that, is probably the hardest part about all of this. I love him & miss him badly, my heart aches for him!!
I can't write anymore than that, unless I want mascara running down my cheeks.
So, cling tight to your spouses, they're the best thing that will ever happen to you!
Prepared just for you by Our Ohana at 12:51 PM
Monday, August 10, 2009
Yesterday, they turned Kameron off of the dialysis machine! woohoo! They will see how his kidneys do and if they jump back in and start doing their job. If not, they will just put him on regular dialysis 3 times a week and that will help his kidneys start working again.
His vent was down to 45% when I left and he was doing really good - oxygen levels right around 95%.
He still wasn't awake but, had moved his mouth when his nurse was brushing his teeth. I think he is just so weak, he doesn't have the strength to do anything.
They moved him to another room - #461.
On Thursday they are doing surgery for his trach!! yay! I am so excited for that!
I just talked to his nurse today and he said that everything is pretty much the same since yesterday. His blood pressure and heart rate are both a little elevated. His bloodwork looks better than yesterday and his liver enzymes have gone down a bit. His blood has almost normal carbon dioxide levels.
And he still isn't really awake. Just the same as yesterday.
I won't be down there today. Lil' Man has a dentist appointment. Tomorrow, it depends on how Kameron is doing when I call in the morning. If he is more awake, I will head down. If not ... I'll just wait until Thursday and Kason and I will go for his surgery.
Hopefully I will be able to give okay updates even if I am not there.
Prepared just for you by Our Ohana at 10:52 PM
Yesterday before I left to go home I was really hoping that Kameron would wake up and I would see him awake before I left. He didn't wake up all the way but, he would open his eyes and teeny-tiny amount and look over at me when I would talk. So, I KNOW that he can hear me and knows I am here. He is doing the same thing today but, more often.
His vent setting is down to 50% with his oxygen level in his blood, right around 90%. And he only has his TPN running, and even that they are trying to wean him off of. He has been off his blood pressure medication since yesterday at 4pm so, 19 hours. If he makes it to 24 hours (4pm today) then they will turn off his CRRT machine! His blood pressure is looking really good so, I am crossing my fingers he'll make it!
We are waiting to see the ENT about his trach. Hopefully he will be in today and we can get that done!
Kam's nurse was saying that Kameron could be so lethargic because he has high levels of ammonia in his blood and with his liver enzymes being high, his liver isn't clearing it out. So, they gave him a medication through his NG tube that will pull the extra ammonia out of his blood, through his GI trac. His nurse also told me that he has NO bed sores! I was surprised by that since he has been in the same position for weeks now. He just has some thick skin ;)
I have been thinking alot over the past couple of days how GRATEFUL I am for each of you. Your love, support, generosity and concern amazes me! I am so grateful there are such generous people. I have had some amazing experiences with people, some that I do not even know, that I will never be able to forget! I don't know how else to express my gratitude except to say THANK YOU!
(that and you're all invited to Kameron's "We're glad you're here, happy birthday & way to go" party, when this all blows over! ;)
Prepared just for you by Our Ohana at 11:54 AM
Sunday, August 9, 2009
Today we came to the hospital right after Sacrament Meeting. When I had called Kam's nurse at 7:30 she said that overnight he would open his eyes and track you but, that was all he was doing and he hasn't done that since. I'm just so anxious for him to wake up! I know he is just going to be so weak and probably will panic a little bit when he sees all the things hooked up to him! But, it will be nice to see him awake!
Dr. Hueng showed us the x-ray of Kameron's left lung right before they put in his chest tube - there was like 2 inches of extra air/fluid on the outside of his lung! It was crazy. No wonder he has been having a hard time breathing! Then - he showed us the x-ray of his lung about 15 minutes after they put in the chest tube and it was fully expanded again. Crazy, how quick it fixed itself!
Kameron only has ONE medication running right now - his blood pressure medication, which helps keep his BP up. His platelets are at 41,000 but he has been doing fine with bleeding. They didn't have any issues with him bleeding yesterday when they put the chest tube in.
His CO2 levels are good. His oxgenation is at 65% and his oxygen levels in his blood are at 95%. They did have it down to 60% but, he kept dropping down below 90% so, they put it up.
Tomorrow Kameron will have a consult with the ENT for his TRACH!! (woohoo!) When they do the surgery, they will also do a CT Scan of his brain, neck & chest, just to check on those an make sure it all looks okay (no internal bleeding, etc.) all at the same time so, they only have to take him out of the room once.
Today they are also supposed to do an ultrasound of his liver and pancreas and of his heart - I believe. They couldn't do them yesterday because he had too much air underneath his skin that they couldn't get a good picture so, now that the air is mostly gone - they should be able to see it better. It's crazy - you can feel the air under his skin and it almost feel like ... Rice Krispies! It's weird.
Oh - they are hoping to take him off of the CRRT and try doing normal dialysis. But, he has to be off of his blood pressure medication for 24 hours before they can do that. And they just re-started it at 11am today, so we will still wait on that.
and that's it! I am trying to be patient with him waking up but I can't! I am so impatient. ;)
Prepared just for you by Our Ohana at 2:37 PM
Saturday, August 8, 2009
Time has FLOWN by! I cannot believe Kameron has been in ICU for a MONTH! When we first started this journey, I wouldn't have ever imagined I would be 30 days into this ICU journey, with so much more ahead of us!
But, it's good. Things are good. I'm learning a lot (about myself, about others, about medical stuff). Kason is my little trooper. The nurses on Kam's floor rock (I think introductions are in order...). It's been a long 30 days but, at the same time - it's gone by so fast!
Anyways! Today was a good day. This morning they put Kameron's oxygenation down to 60%! They were hoping by the end of the day to get it down to 50%! woo-hoo! Because of this they also ...
You have no idea how excited I was about this!! I was there most of the morning waiting for him to just pop open his eyes and be awake. BUT ... he has been on such a high dosage of sedative (plus the paralytic) and, his liver enzymes are high (more on that in a bit) and his kidneys are still on dialysis that it is going to take him a lot longer than normal to wake up. So, I left the hospital at 3:00 and his brain activity was still only at 50% (which btw, I learned, it's just percentage ... not anything fancy). So, we're still waiting. It's 8:00pm now and I just talked to his nurse 30 minutes ago and he still isn't really awake. He will do things that show he is coming out of sedation but, he isn't awake and alert yet. I can't wait to see him awake again!
Within a day or two they are hoping to put the trach in. Yay!
So, we are slowly, steadily moving along. We are a long ways from being out of the hospital but, we're getting there!
Prepared just for you by Our Ohana at 8:51 PM
Friday, August 7, 2009
Since they have taken Kameron off his paralytic he has been doing really good without it! It took awhile for him to become un-paralyzed, it usually takes 2 hours but because Kameron has kidney issues it took longer. Probably about 5 hours.
He has been coughing and they do this test where the send electric currents through his body and see how many times they get muscle spasms back. When they have done this they get 4 out of 4 spasms, which is good.
Their main concern was his breathing and how his peak airway pressure would be affected. But, so far gua breathing has been just fine!
He is still sedated but, they lowered it some today. I am hoping that they will continue to lower it so Kameron can maybe be more awake and alert.
Today, our good friends from Thatcher, Cami and Shawn Warren & all their adorable kids, came to see us today. It was so fun to see people from Thatcher & visit for a bit. And they saved my life by getting me some phillipine brand mangoes from Costco (thanks again guys!)
I decided I need to document when people come to visit because I will never be able to remember everyone who has come and I want Kameron to know who has stopped by. (for the record: Mason Nicholls dad stopped by, brother schlessinger from our ward stopped by and Kameron's boss has stopped by...I think that's it. If you have come by and I didn't remember - PLEASE remind me!!!)
So besides some yummy cold stone with Holly Hamilton - that has pretty much been our day. My mom headed back home tonight so, I am back to wrangling Kason on my own.
Tune in tomorrow for an update! ;)
Sent from my BlackBerry Smartphone provided by Alltel
Prepared just for you by Our Ohana at 8:30 PM
Last night, around 5pm, Dr. Hueng came and put in the chest tube to help Kam’s pneumothorax. He cut a little incision about 3 inches down from his right armpit. Then he dissected his way through the muscle and fat until right before he would break through. Then, when he put the rubbery tube through, you could hear all of the air escape! It was crazy! Just like a little gust of air letting all of the extra air out! Then, they hooked it all up and bandaged him up.He also took out Kameron’s catheter’s that were in his groin, the vas-cath. Those things were HUGE! They were probably like 7 or 8 inches long! YIKES!
And, the super good news that I was so excited about last night, I wanted to tell it to everyone I saw: His platelet count was up to 90,000!!!! And his white blood cell count was up to 7.5! What a jump! I was seriously so excited because I know that they have been putting off doing a lot of procedures, that will help him get better, because of these two numbers being low! So, now that they are finally climbing – we’re getting closer to being able to do these procedures! Happy day!
This morning around 9:30 they turned off Kameron's paralytic. They are watching his peak airway pressures to make sure they stay at a good level (whatever that means!) He is still sedated but, atleast he is slowing coming off his medications. His oxygenation is also down to 70% today. And his platelets are at 71,000 (I am assuming they dropped since yesterday because yesterday when they did the count, Kameron had just received one unit of platelets), and his white blood cell count is up 10.5!
So, we are definately taking baby steps in the right direction! Kameron is still very ill and in ICU and all that jazz BUT ... we are getting good news so often now that it's SO encouraging! I know that we still have a long road ahead of us but, it makes things easier when it's positive news we hear each morning!!
Prepared just for you by Our Ohana at 11:36 AM
Thursday, August 6, 2009
Alright! Kason, my mom and I were at the Children's Museum here in Tucson when Kameron's nurse called.
She told me they were going to be putting a chest tube into Kam to get rid of his pneumothorax.
The pneumothroax is a leak in the lungs causing air to seap outside of the lungs. It puts pressure on the lungs and kind of closes it in - making it hard to breathe and for the oxygen and carbon dioxide exchange to take place.
So, when they put this chest tube in, it acts as a negative pressure and pulls all the extra air out and allows the lungs to expand. This will help Kameron's respiratory numbers. His oxygenation is at 90% and the oxygen in his blood is 92% so, hopefully with this in his breathing will come easier and less strained.
They will be giving him two bags of platelets and then doing the procedure in his room - no need for an O.R. :)
Prepared just for you by Our Ohana at 2:19 PM
Today they were hoping to take Kameron off of his paralytic, which is the medication that keeps him paralyzed. They did this initially because he was kind of fighting against his ventilator when he was breathing so, his breathing became very difficult - even with the respirator. But, they are not going to be taking him off of it today. Last night they started to give him back some of the fluids they had taken off, to help his blood pressure and when they did that it affected his breathing. So, his vent settings are back up to 90% but, it's not a bad thing. It's just because of the extra fluids. So, they will wait another day and see if they can possibly do it tomorrow.
Good news = his white blood cell count is up to 2.3, so that is climbing. Yesterday it was 1.6!
Also, they were able to take him completely off his blood pressure medication.
His platelets had dropped down to about 19,000 and today they are up to 23,000 - so that is also climbing.
The main thing they are going to be focusing on in the next 24 hours is to try and get his breathing back down and to see if they can wean him off the paralytic.
That is about it. I am just grateful for the little bits of good news we have gotten. We went so long with no good new and lots of bad news that it was getting pretty exhausting! Kameron is still really sick; on the respirator, sedated, in ICU, etc. etc. BUT ... these little bits of good news definately help to get us through the bad news!
Prepared just for you by Our Ohana at 10:01 AM
Tuesday, August 4, 2009
Yesterday morning we spoke with Kameron’s pulmonologist on the phone. I was in and out of the conversation because I was trying to keep Kason happy. But, Matt & Daniel were able to listen.
He told us that hopefully this week we will see the positive effects of the Cytoxan. The medication usually starts working 7-10 days after it’s given and they gave it to Kameron LAST Monday (7/27). It is lowering his blood counts but, that will lower the effects of the lupus. Like yesterday his White Blood Cell Count was something like 0.2 (and today is 0.3) – when normal in above 4 (If I remember correctly). So, he has almost NO infection fighting cells right now. We have to wash our hands before we go into his room and we can’t touch him at all. His platelets were at 35,000 yesterday and they did say that his H&H count (which I believe is hemoglobin and something else hemo) is at a good level. His sodium levels are low and his potassium levels are high so they are adjusting his TPN (nutrients in a bag) levels and will mix all his medications in salt water instead of sugar water. They also increased the amount of liquid food they are giving him. This food is basically like Ensure, specifically for ICU patients. And his oxygenation levels are at 70%! Just on Friday they were up at 90%.
Dr. Hueng also told us that Kameron’s pancreatitis is completely resolved so, there are no concerns there. Everything left, that is being affected, is because of the lupus.
Dr. Hueng used a lot of medical terms that I didn’t know so, I would get confused about a lot of things and then have to run off to check on Kason and I would miss parts, it was hard to not be able to just sit and listen and ask questions.
He was saying something about some equipment that they have at University Medical Center (UMC), that they don’t have here at TMC. It would help Kameron in his breathing (I THINK! I wish I could remember) but, he is so sick that they don’t dare transfer him to another hospital. They aren’t even taking risks to transport him out of his room for a CT Scan so, there is no way they would move him to another hospital!!!
And … he is thinking that Kameron still has another 2-3 months in the hospital followed by extensive physical therapy. We have got a long road ahead of us and I need to make some decisions about what I am going to do. I want to be with Kameron now because he is so sick – but, he is sedated and I can’t even talk to him. Then when he is on the mend and not sedated, HE will want me there and I will want to be there. It’s so hard to know what to do!!!
Dr. Hueng also said that Kameron has a high risk for mortality. Like … 60%. But, the doctor’s are all hopeful and they say they are going to do everything they can to get him better. I have faith in his doctor’s and I have faith in Heavenly Father that he will fulfill the promises he has made to Kameron, through Priesthood Blessings, that he will make it through this.
It doesn’t make it easy to hear that 60% chance of mortality though. It kind of shakes your faith a bit and it makes you question what is stronger – medicine or God? But, we all know the answer to that and I know that miracles happen and that I have one strong husband who isn’t going to give up. He has too much living left to do to give up now!!
Today when I spoke with Dr. Hueng on the phone he said that Kameron’s lungs are improving. They are also being very cautious about infections. Last night Kameron spiked a fever of 101.8 so they cultured all of his lines to see if he has any infections. Cultures take 2-3 days so, we will know the results of those in a few days. If one of them is infected they will pull it out and replace it. They did start him on a new antibiotic today, just in case.
His nurse today told me that they are no longer pulling fluids out of Kameron, which they were doing for awhile. This makes him look so skinny because he doesn’t have all the extra fluids in his body!! Also, they were able to lower his blood pressure medication and hopefully will be able to stop it completely by the end of the day. His oxygenation is at 70% and he also has 70% of oxygen in his blood – which is good. His carbon dioxide level is down to 50, which is the lowest it has been in several days. A normal carbon dioxide level is 45 – so close! They are continuing the CRRT (dialysis) which is pulling the toxins out of his body. And, today Kameron’s brain activity has been high. He will be normal for awhile (normal is around 30…and I don’t know what brain activity is measured in but, 30 somethin’!) and then all of a sudden it will jump up to the 70s or 80s! So, his nurse increased his sedative this morning but, he has still be doing it and they aren’t sure why. Maybe it’s his way of telling us he is sick of this. Who knows?
I think that is all for today. Some very encouraging news today – proof that Kameron is fighting! I sure love him and I am grateful that he is so stubborn. See, before I would always complain about him being stubborn but now I am very grateful for that trait!!
Prepared just for you by Our Ohana at 1:26 PM
Sunday, August 2, 2009
Today, Daniel talked to Dr. Hueng, Kameron's pulmonologist. He told Dan that Kameron is having a "Lupus Crisis"
Here is some information about a Lupus Crisis that I pulled from THIS website:
With this new information, I do not see an end in sight.
That is how I feel today.
However, I have decided that this is my life RIGHT NOW. This is what I am being faced with today and just like any other trial or difficult day, I cannot back down for that is what the adversary wants. I can't worry about 2 months down the road. I can't wonder what could have been done differently in the past.
I have to live TODAY. And what good will it do to sit and complain about my life right now? It will just make it more miserable for me and for everyone around me.
I am always amazed at the Lord's tender mercies that seem to manifest themselves at the perfect time;
I am GRATEFUL for my AMAZING friends who have been such a support to me, more than I think they will ever know.
I am AMAZED at the outpouring of love from people all over. It seems like each day I am learning of someone else praying for us. (and I thank you).
I am AMAZED at the strength of my husband during all of this. The few times he has been awake, his Spirit has been so strong. He is such a fighter and for that I am GRATEFUL.
I have SO much more to be grateful for! It's all about the cup being half full - not half empty.
My mom told me a quote once that said:
"Everything will be alright in the end, and if it's not alright, it's not the end."
Prepared just for you by Our Ohana at 1:53 PM
Saturday, August 1, 2009
Today they changed Kameron's oxygen setting to 85% (meaning the respirator is giving him 85% of his oxygen) but, his oxygen levels in his blood dropped more than they wanted them to so they put it up to 90%. It has been at 100% for a long while so, 10% decrease is good! It's a little progress.
They also did a test to check his CO2 levels and they are getting better.
And the propofol that he has been on has been affecting his blood pressure so, they changed it out today to a different sedative, Midazolam, which is the same one he was on a couple weeks ago.
Those are really the only changes. I cannot believe Kameron has been in the hospital for 4 weeks!! It is crazy that time seems to be going so slow and yet passing quickly at the same time. It makes me sad to think that Kameron is going to wake up and not remember anything about July. I still can't believe it's August!
Kason and I came home today to take care of stuff and we'll be going back Monday. My mom will meet us down there Monday and stay for the week. It's been SO nice to have both of them there with me!!
Prepared just for you by Our Ohana at 11:52 PM