8/26: One week

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.

8/21: What a LONG day!

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
10:00 am
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!

8/20: The Morning After

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.

You can't always be strong ...

Last night was the first time in my life that I cried myself to sleep.
It was such a rough day yesterday.

I was negative most of the day, wondering why it's US going through this and how much longer we are going to have to suffer through this. How much more bad news can I take? How much more can Kameron's body suffer through? How long can Kason handle all of this? It didn't seem fair to me yesterday, I didn't feel strong enough to handle it anymore.
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.

Yesterday I couldn't do anything but sit by Kameron's bed and cry for him. To see his body fight so hard to get the oxygen it needs and then to still only have 85% saturation. I would cry and cry until he would wake up and then I needed to be the strong one. I choked back my tears and held his hand tight. During one of these times that I was looking into his eyes, I saw 2 little tears fall from his eyes. It made me hurt knowing that he is having to be the one going through this and suffering the way that he is.

I know that he is strong and I know that he has been given the promises of making it through all of this but, seeing him the way that he is and being told the things we have been told by the doctor's - it shakes my faith a little bit. I try to cling tight to the things we have been promised but it is so hard to hear words like, "life-threatening" "poor prognosis" & "mortality rate". And it's so hard for me to not wonder ... what will our life be like after this is over with? What kind of shape will Kameron be in? How much normalcy will we be able to reestablish?

I know that I need to live for today and not worry about tomorrow but that is a hard thing to do when your best friend is the one amidst all the worry.


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!

8/17: Can we get some consistancy PLEASE?!

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!

Introducing...

Kameron's team of nurses & doctors!
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.

Doctors:

Dr. Hueng: Pulmonologist. Very intelligent. CARES SO MUCH about his patients! I remember when Kameron had had several days of bad news and then the next day his numbers climbed (more like tripled), well when the nurse told him Kam's new numbers he jumped up and down saying, "yes!" Bottom line: Dr. Hueng is awesome.

Dr. Hedeli: Pulmonologist (works with Hueng) ... basically, he reminds me of the big alien on Lilo & Stitch. Accent, looks, laugh ... exactly.

Dr. Gold: I honestly don't know what kind of Dr. he is, I think he is just a basic hospital doctor, roams the halls and does a little bit of everything. Anyways, he is ... interesting, for lack of a better word. He always looks upset and hardly ever says anything but, you can tell that he is brilliant.

He also has lots of other Doctors:
Dr. Insell (Internal Medicine)
Dr. Jan/Dr. Walshaw (Renal)

Dr. Soderberg (ENT)
Dr. Karl/Dr. Howe (Rheumatologist)
Dr. Nasif (Infectious Disease)

And they are all really great!!


Day Nurses:

Julie: GREAT nurse. Takes time to explain things to us, in ways that we will understand. Just don't get on her bad side ;)

Ron: Also, a very excellent nurse that will explain things to us whenever he is doing something. Can tell he really cares about Kameron and wants him to get better. Just celebrated 10 years of working at TMC.

Tery: Seriously, SO sweet. I loved when she was Kameron's nurse.

Natalea: Very intelligent nurse! Knows so much about what she is doing!

Leah: Really sweet. LOVES Kason. Works hard to get things done.

Gabe: Tall dude. Very focused on his work but, takes time to get to know the patient and answer any questions we have.

David: Could POSSIBLY be LDS, really looks it. And has only been married 18 months and has a 6 month old ... hmmmm. He really takes time to get to know us, is always checking on how we're doing and how Kason is handling everything.

Richard: Looks almost identical to Daniel. I kid you not. When Kameron was on the sedation (and awake) and Richard was his nurse, Kameron asked me if Richard was Daniel.

Night Nurses:

(I don't know many of these, just because I'm not usually here at night!)

Chip: Drives a Harley. Loves to play with Kason. Cares about Kameron but, also always takes time to ask how I am doing.

Lindsey: Seriously, Lindsey rocks. Like I want to hang out with her because she is so much fun. When Kameron was awake and she was his nurse, he was like, "great, you guys are gonna talk all night - you're going to get along way too well!"

Techs:


Graham: Working his way through medical school by being a tech. Lots of fun, jokes around with Kam when he's awake. Very friendly.

Pat: Jolly. That is seriously the best way to describe Pat. He sings and dances and whistles ALL day when he is working. He is lots of fun.

Charge Nurse:


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!

SO ... there ya have it. The people we spend day in and day out with. Kameron has an AMAZING team of doctors and nurses that work with him.

8/16

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! :)

"I love you, daddy!"

8/14

Wow, we have had quite the interesting past few days. I am exhausted from it! So, as a warning - this will probably turn out to be a long post!

When I was at the hospital on Wednesday, even though Kameron was somewhat awake, I could tell that he was having a hard time comprehending a lot that was going on. I was a little concerned about this and especially because when he looked at me, I could see a little desperation in his eyes and almost confusion. I had asked him if he recognized me and he didn't nod his head, so I was afraid that for some reason - he had no idea who I was. I was also worried because his right eyelid was really droopy compared to his left. I wasn't entirely sure what might cause that - but I did know that it was a sign of stroke. So, I came home Wednesday night and worried about it that night but, I knew in the morning I was going to have to get ready to head to the hospital for his trach surgery.

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;

"We did the CT Scan this morning and it showed that your husband has significant brain damage."

My heart DROPPED.

Had I been prepared on my drive to the hospital to hear this news so that it wasn't such a punch in the gut? He told me that he had hemorrhages in his brain and then he went on to talk about his lungs - which I have no idea what he said about that. My thoughts were still stuck on, "brain damage." It's different to just think it's a possibility, but when you hear it come out of a doctor's mouth - it's not easy to hear, at all. He told me that they aren't sure how much damage was done or anything, he told me I would have to wait for the neurologists to come by.

Well, this happened at about 11:30 and I had to wait until 5:30 to talk to the neurologist!!!! Thank heavens my mom was there for support! I was going crazy all day. I was sick to my stomach, I couldn't think straight, I was close to going crazy. I had gotten his CT Scan report and was googling almost every medical term on there to see if I could make any sense of what they saw. I learned a few things but, nothing that brought me comfort.

Finally, at 5:30 the team of neurologists came in (an attending, a resident and an intern). They told us that they really couldn't tell us much until they ran some more tests. They wrote orders for an MRI and an EEG, which measure the brain waves. Great, so another day of waiting for answers. That night, right before we left, his night nurse said that they would do the MRI around 11:00pm.


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.

When I got there this morning, I talked to Kam's nurse. He said that they had done the EEG and it didn't show any abnormalities. That gave me a little bit of relief. Then, the resident came in a talked to me. When she talked about the EEG she also said that it didn't show any abnormalities - which proves he isn't have seizures. She did say that his brain was a little sluggish but, we had already assumed that. She said that they were still waiting on the actual report of the MRI but they had seen the images and there were definately some things on his brain. I asked her about the hemorrhages and she said that there were teeny tiny, almost like little pin pricks filled with blood and they should go away without presenting any problems. What we need to be worried about is the areas that were affected by hypoxia (lack of oxygen). Basically, during all of this, certain parts of the brain hadn't gotten the oxygen and blood flow that they needed so, the vessels have shut down and have made these areas "low density". So, she told me she wasn't sure what areas were affected and how they would be affected and we would need to wait to talk to her attending before we could get any real answers.


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.

Art asked if he is just sluggish because of the sedatives still being in his body, since they haven't been cleaned out because of his liver not working right. She said that could be a possibility. We will just have to watch him the next little while and see.

What she told us, is that with Kameron's case, she doesn't want to worry about the images or the scans or the tests. Her main concern right now is if he is progressing clinically each day. That is her main concern. If he is doing that - then she will be pleased. If he was just laying there like a vegetable, I would see the reason for concern. I am glad that she told us this because since Wednesday, every day I have seen improvements - even in the few hours I am with him.

Yesterday when we were there, Kam would move his right hand and he would barely be able to keep his eyes open for more than a few seconds. By the end of the day he was starting to move his neck. He was also able to recognize me and Kason (when I showed him a picture), so that was a relief!

Today, he was able to move his left hand. When he would squeeze my hand today with his right hand, I could tell he was just a little bit stronger than yesterday. Today he could keep his eyes open for much longer periods of time and he was awake a LOT more than he was yesterday. I would say yesterday his wake/sleep ratio was close to 10/90, today it was closer to 30/70. He started moving his right shoulder today. And even his right eyelid, was a little less droopy today. He was also moving his mouth and tongue a LOT today! He kept trying to chew on his breathing tube but, he didn't have the strength to bite down. So, there was definately progression today. This makes me very optimistic and positive.


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.

Don't ask me about anything else that is going on because I really can't tell you much. His vent setting is down to 45%. He has a virus called CMV. A lot of us have been exposed to it and even gotten this but, because we have immune systems, we never see the effects of it. With Kameron, since he has no immune system, it's affected him. The infectious disease doctor said that CMV often attacks the liver and the lungs. SO, they put him on another chemotherapy drug (that is nowhere near as strong as the Cytoxan), this drug is called: Ganciclovir. Still doing dialysis on Tuesday, Thursday & Saturday. They are planning on doing the trach sometime this coming week!


Sorry for the days hiatus ... I had alot on my mind!

My little bro is starting up a photography business and he is very talented! So ... hop on over to his BLOG and WEBSITE to check out his work! And you can purchase some of his awesome landscape prints!!

Thanks!

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I will post about Kam, later today. We are waiting for a visit from a doctor before I can post anything.