Friday, July 31, 2009

I haven't blogged much lately because there hasn't been much to blog about regarding Kameron.

He has been about the same since Monday. A few changes on his blood count due to the Cytoxan and his breathing has been a little unstable and they have had to adjust the ventilator a few times to get the settings right.

His nurse mentioned something about him having too much carbon dioxide in his blood and they are trying balance that out. I will be honest in saying I have no idea what that means and how they balance it out.

They are still trying to figure out if he has a pneumothorax. Its hard to say but, they are still finding air in his soft tissue, which obviously isn't a good thing.

I forgot to mention that Kason is with me now. He has been with me this whole week and my mom has been here to help out, so I am a little less lonely. Mom will be back next week to help out, it is a HUGE blessing to have her here. I don't think I would be able to survive without her!!

Tonight after dinner (and a visit to the hospital) Kason and I shared a tagalong blizzard (SO yummy!!) and went swimming. Its good to have my son back with me!!! I sure missed him!

That's all the news from here!!!

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Wednesday, July 29, 2009

Alright, since Monday we have had a few changes.

Kameron had to have a surgery on Monday to put in a catheter in his shoulder so they could do some procedures with it. After the surgery, and while still in the O.R., his oxygen levels dropped to below 85 and his blood pressure dropped a ton so, they had to do a lot to get it back up and once he got back to his room it took him several hours to stabalize his numbers.

Kameron's kidney's were really starting to slow down (which was actually a surprise to me because for so long they had been telling us that his renal function was really good) so, they started him on Continuous Renal Replacement Therapies (CRRT). It is basically like continuous dialysis. It does the work of his kidney's so his kidney's can have a break and just rest. He will probably be on the CRRT for a few days to several days. Then they will slowly put him down to normal dialysis once a day and then every few days until his kindeys are back to normal function.

They are doing the plasma forisis. Started it Monday and they will do 5-7 treatments of that. His plasma is still a dark brown color when it should be golden/yellow.

They gave him the Cytoxan on Monday. It was only a one time dose so, he is done with that for now.

Today the Pulmonolgist said they think he might have pneumothorax, which is a lung puncture. With a chest x-ray they didn't see anything and they don't want to do a CT Scan because they don't want to expose him to everything in the hospital, they just want him to stay put in his room.

He also mention that Kameron has some oxygen pockets in his throat so, there is some concern that he may have a puss pocket on his thyroid or throat and they will do an ultrasound to check that.

His lungs are still really weak so he is obviously still sedated and on the respirator. His platelets ARE up to 69,000, as of yesterday. I haven't heard todays numbers. So, atleast that is going up.

Monday, July 27, 2009

I wish I were a doctor ...

Mostly so I can understand the things the doctor's DON'T explain and understand the things that they DO explain but they don't make any sense to me ...

This morning I talked to Kameron's pulmonologist and he said Kameron has gotten SICKER since he has been gone (which was the beginning of LAST week). I am so confused ~ I thought that things were looking better, his numbers were increasing, his platelets were going up, his pancreas is looking good, his kidneys are doing good ... etc. etc. But, I guess his lupus is just kicking his butt.

Here is my theory ... all this time they have been treating all the individual things (his platelets, his kindeys, his blood pressure, his pancreas) but, they haven't been addressing the issue that CAUSED all of this; his lupus. So, the lupus just kept getting worse and worse. That's my theory ... who knows how correct it is. Don't quote me on it ;)

What they are going to do is re-start him on the plasma forisis, that is the treatment where they pull all his blood out of his body and take out his plasma and replace it with fresh plasma. So, they will hopefully be able to start that if they can get the line in early enough. They are also going to start him on the Cytoxan today. We are just waiting on the pharmacy to come calculate his dosage.

Today he is on the propofol (the sedative) and he is also on a medication that paralyzes him. So, he is sedated AND paralyzed. He ain't goin' anywhere! :D And they don't want him awake AT ALL! They have this thing on his forehead that measures his brain activity to make sure he isn't getting TOO sedated.

Also, this morning the nurse took his temperature and it was like 93 degrees! So, he's got a warming blanket on him. And I am not sure what his platelet count is today so I don't know if it is up from yesterday's number.

Pray that we have a week filled with lots of progress and that the Cytoxan will do the trick!

Saturday, July 25, 2009

Yesterday was a BUSY day! Saw lots of specialists and just had lots going on. After moving us to room 487 they moved us AGAIN last night to room 457! Hopefully we'll stay put here!!

They did a bone marrow biopsy to check his marrow levels and see what is causing the low platelet count. They are also going to check his marrow against a medication they are thinking about starting him on, to see how it would respond.

His insulin numbers have been within normal-ish ranges for the last several days. And his kidneys are doing good. I haven't seen a liver doctor for a few days so, I have no report on his liver.

The Ear, Nose and Throat (ENT) Doc came in yesterday to assess Kameron for the trach. He was checking his thyroid to see if it would be safe to do it. (and also take into consideration his platelet count and blood pressure). He wants to wait a few days to see if things improve so it will be safer to do the surgery. It was a good day for me to wear my BYU shirt, the ENT grew up in SLC, is LDS and went to UofU. (how's that for a bunch of acronyms!? ha!) I love having LDS doctor's, I know that we're on the same page about a lot of things!

So ... we will continue to wait and see on that.

Now ... this medication they are thinking about putting him on is Cytoxan. It is actually a chemo-therapy drug that they have found effective in treating autoimmune diseases. It is not a drug they use lightly. It will basically attack all of his cells, good & bad. It's a tough medication that has a lot of risks. One is kidney interference and another is it can cause either sterility or infertility. Yesterday I was having a HARD time with this. I didn't want to have to be the one to make the choice of possibly damaging his goods, which may only give us one biological child. I think that if we had 2 or 3 kids, it would be a different story. But, after I talked to several people and I remembered some promptings that we have both had, I know that things will be okay. This medication may be what we have been praying for to get his lupus under control. And from the research Holly did (thanks!!) it is RARE for complete sterility to occur. SO ... if his bone marrow is going to respond well to it - we're going to go forward with it. I still get nervous when I think about it sometimes just because there are so many risks but, he is only going to be on it for a year, most likely. So that lowers his risk of the more serious side effects/risks.

He is also BACK on the sedative. Last night he pulled out his Arterial Catheter Line (ART) in his wrist. SO, this morning he is sleeping again.

ALSO! His platelet count went UP!!!!!! I am so ecstatic about this!! Yesterday his platelet count was 25,000 (I think, if I remember right) and today his platelet count is up to 38,000!!! That's a huge jump!! So, keep praying his platelets will continue to increase! They aren't sure if it's from the IVIg, I haven't talked to a doctor about it - just the nurse. But - it makes sense to me.

So, things are continuing to look a little better each day, which I am very grateful for. No other news from here.

Friday, July 24, 2009

A Days' Hiatus

Yesterday I didn't post because I took a day off from the hospital!

Last year, when Kameron was sick, I learned that I also needed to take care of ME.
Some people may disagree and call me selfish and think that I need to be at the hospital during all my waking hours.

But, last year I would burn out so quick and then I didn't even have the energy to take care of Kameron let alone me and Kason.

So, this year when Kameron got sick and ended up in the hospital I made sure that "ME time" was towards the top of my priority list.

I've been on vacation.
I've gone to bunco night.
I got a pedicure with Kara and Camille (thanks girlies!).
I went and saw WICKED.
Yesterday I went to the temple.
And last night I went to dinner with my good friend Laurel (thanks!).

After each of these "ME times" I'm refreshed and ready to start the next day.
I KNOW that there are people that don't agree with my choices to do those things but, I've heard a saying several times that goes something like this:

"Nobody knows exactly what I'm going through until they've walked a mile in my shoes."

So ... regardless of what people think, I'm continuing my "ME time" because I like it and it keeps my sanity. And people can critisize my choices all they want but, they have no idea what it's like unless they have been through this before. SO ... now that that's off my chest;

Kameron is doing good.
He is still on the respirator and I'm glad for that. I am hoping they just keep him on it until they are SURE he is ready to be extubated.

His platelets are still really low.
A normal person has between 150,000-450,000 platelets.
Yesterday Kameron had 23,000 platelets.

Soooo...we need those platelets up! This IVIg that they're doing is supposed to help that but, we're still waiting to see the results. Any nurses or doctor's out there ... any tips?!

Everything else is looking good. His renal function is awesome. His insulin numbers are finally normal so his pancreas is stabalizing. He still has a little bit of jaundice but, I can see some improvement. His blood pressure is a little high and they're working on controlling it. All in all, he is improving in all areas but his platelet count.
They moved him into a new room (487) so, now we have a whole new team of nurses to get to know. :D But, still in ICU.
He is off the sedative this morning. Just giving him a break from it. He was able to sleep for a couple days straight so, he got some good rest.

Other than that - nothing new! We are just being patient with the whole process.

Love to each of you!

Wednesday, July 22, 2009

Last night, after eating dinner, I came back to the hospital around 9pm. I only stayed for just over an hour but, in that hour - Kameron was a PILL! He tried pulling his breathing tube out, pulling off the respirator tubes, pulling out his NG tube (which is a nasogastric tube, it goes through his nose into the stomach and pumps everything out of his stomach.) pulling out one of his central lines, pulling off the things on his chest. I was constantly putting his hands down saying, "You gotta leave your hands down!" He would guesture to me, "Why?!" And I would just tell him, "because they will help get you better!!"

It was SO frustrating but, I totally understood where he was coming from. The charge nurse was explaining to us why he's like that ... this new sedative he's on works better than the other one so he is sedated more. When he wakes up he panics and wonders why he has tubes down his throat. The last sedative he was on didn't work so well, so he was awake practically the entire time and he was aware of what was going on. Most of the night he was pretty anxious, didn't get much sleep.

So, today, they have put him on TWO sedatives. He is on, Midazolam and the Propofol. So far it seems to be working. He hasn't been awake at all today.

He has been running a fever so they have done blood cultures to find out where he has an infection. Last I heard his fever was 101.0. They also just did a chest x-ray to see how his lungs are looking. They have talked a little more today about doing the tracheotomy today but, I haven't heard anything else.

Today, I am exhausted and it's FREEZING in his room, so I really haven't been in there much. Just trying to sit in the waiting room and get a little rest.

On a side note, one of Kameron's pulmonologists TOTALLY looks like the big alien on Lilo & Stitch, he even has an accent! It cracks me up.

Tuesday, July 21, 2009

One step forward & Two steps back ...

Atleast it's two steps back in the direction needed to get him better.

This morning, after they put that oxygen mask on, they decided to put Kameron BACK on the respirator. Crazy huh?

BUT ... as hard as it is to watch him with a tube down his throat and think of how miserable he must be, I know that this is something that needs to be done to get him better. That doesn't make it any easier though.
So ... what's going on? ...

Kameron's platelet counts are low. Platelets are what make our blood clot. So, when they pulled the tube out yesterday he started bleeding into his lungs. When the tube was in, there was pressure going into his lungs which would clear out all the little pockets on his lungs. When they pulled the tube out, that pressure wasn't there anymore so, the blood just filled up each of the pockets on his lungs. And since they have him on the respirator - they won't be giving him any medication to dry up the fluid.

So, what they are going to do is finish this IVIg treatment that they started on Sunday. The hope is that this will get his platelet count up so that they won't have the problem of bleeding into his lungs when they decide to extubate him again. Hopefully they will keep him on the respirator for several days just to be safe. They have actually talked about doing a traecheotomy (where the cut an incision in his neck and put the tube right through his neck) which would be better and safer for Kameron. When the respiratory tube is in his throat, it passes right by his vocal chords and the longer the tube is there, the more risk there is for damage to be made to his vocal chords. So, with the traech tube, it doesn't have that risk. The only issue with that surgery - is his platelets. They aren't sure if they can do a surgery with his platelet count as low as it is.
We will see what happens with all that.

Today they intubated him around 10am I think. It took him awhile to settle down. His body has had so much trauma lately that he was shaking pretty bad. Then, he was struggling for breath and wrote that he could hardly get any oxygen. His nurse just said he was anxious. but the machine kept setting off an alarm saying "high pressure".
Well, his normal nurse went to lunch so another nurse was covering. As soon as he came in - he saw that Kameron was chewing on his breathing tube!!!! It took him 2 minutes to fix it and as soon as he put something in his mouth to prevent him from biting down - all of his breathing stats stabalized. We were pretty annoyed that it took an hour (and a different nurse) for them to figure that out!!!
Now, he is resting good. They put him on a different sedative then he was on last time. They want to make sure he is able to get GOOD rest and not be awake at all. So, hopefully this medication does the trick.

I know Kameron is okay with this. He just wants to get better. I can tell how miserable he is and he just wants this all to be over. We all do too!!!

Until next update ... have a good one! :D

They ended up extubating him yesterday around 10:30am. He was doing really well breathing and keeping his numbers good. Last night before I left, he started coughing a lot and having a more difficult time breathing. He was just TIRED, but his nurse gave him some of his medication that seemed to help.

This morning his nurse, Lindsey (who by the way, freakin' rocked. I loved his nurse last night.) called and said Kameron had a rough night. He just had a hard time breathing, he felt pressure in his chest, and his oxygen levels were really low.

So, this morning they have him on this mask thing that is a great alternative to being intubated. It has a tight seal around his mouth and forces oxygen into his lungs. The respiratory tech said that he has lots of success with this treatment. And since the time that they have started this treatment his numbers are looking better and HE is looking better.

They are also going to put him on some lasiks or dyaretics to help dry up the extra fluid in his lungs. The RT explained to me that his lungs are like a sponge and when they get wet and filled with fluid, they become heavy and that makes it hard to breathe. So, if they get all that fluid out, he will have lighter lungs and he won't be coughing as much, both of which will help him not get tired as easily.
So, I will update when I know more but for now, things are stable. I am hopeful this treatment will work because I really don't want to face, 'third time's a charm' in this case. But, we will see what happens!!
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Monday, July 20, 2009

Good Morning!

So, after last night, when Kameron was talking to someone (he really had a whole conversation with someone) I wanted to find out who it was!!!

I asked:
"Who were you talking to?"
Kam points to the chairs.
"Do you know them?"
Kam shakes his head no.
"Are the dark skinned or light skinned? Light?"
Kam nods his head yes!
"Are they wearing normal clothes?" (I was thinking maybe they were angels, dressed in white)
Kam nods his head yes.
"Are they doctors?"
Kam nods his head yes!!
"And they're talking to you about your health?"

So, he was talking with some doctor's last night. Just to clear that up! ha. ;o)
I am certain that those aren't the only visitors he has had though. I know that angels are here watching over him! It would be interesting to know who ... my family? his family? our kids? Hmmmm ...

I asked his night-nurse about it and he the ICU Psychosis happens a lot. I was wondering if Kameron will remember any of this and the nurse said he MAY just because of how Kameron reacts to the propofol (sedative). As a side note ... Kameron has been on a high dose of this propofol since they intubated him Thursday morning and since Saturday he has been pretty awake. He doesn't always make sense and he's pretty loopy but, walking in to the room you would have no idea he was sedated by the way he acts. Weird. SO ... this morning I asked Kameron if he rememberd talking to the doctor's and he didn't so, I guess we won't be finding out who all he's spoken with over the past few days. (*darn!*) But, the main cause of Kameron's psychosis is most likely the medication he's on and also the fact that Saturday night he hardly slept at all. So, he should be returning to his old - not so loopy - self soon.

Right now, as I type, Kameron is back on C-PAP. Depending on how he does, they are planning on extubating him today. They have already turned off his propofol and are watching his respiratory numbers. We are working on keeping his respiratory rate below 30 and he's been doing really good!! The pulmonary doctor wants to give Kameron a bag of blood before they extubate him. As soon as they get the blood (and who knows when that will be) it takes about 2 hours to get it all in. After that - they plan to pull the tube! hooray!

I can tell Kameron is starting to feel better - he's getting bored. I don't blame him though. He's been in the same bed since the 8th of July!! Hopefully once they extubate him we can get him out of bed and push him around the halls in a wheelchair, get him some change of scenery!

The Kidney doctor came in this morning also and said that he is looking good. His urine output/color is good. And his kidney's are looking good, which they are monitoring CLOSELY because of the IVIg procedures.

They started that IVIg yesterday. He tolerated it really good and hopefully responded to it as well. It's just a big bottle of clear liquid that they give him through an I.V. I'm not sure how long it took to complete but, they started it at 4pm and when I left around 8pm - it was still going with a ton of stuff left!! Good thing he's not going anywhere! :D

OH! They're also planning on taking out his central line in his neck today and giving him a pick (sp?) line. That makes me happy - that central line does not look comfortable AT ALL!

That's all the news for this morning. I will let you know the rest of the day goes and hopefully we will be talking with Kameron soon!!

Love to you all!

Sunday, July 19, 2009

ICU Psychosis

I think my hubby has a case of ICU Psychosis.
And to be honest ... it's kinda funny.
And kinda freaky.

He'll point at someone (who isn't there) and give them a thumbs up.
Or, he starts shrugging and looking confused at the corner of the room.
He starts spelling something out with sign language and looking at the door.

The other day, he pointed to the window.
Then he asked me ... (well wrote really)
Is that Daniel? No dear, there's nobody there.

Just now he asked me to open the side rails of his bed.
When he writes, okay looks more like okkkayy.
And he gets frustrated when he spells things in sign language and nobody is there to answer.

At first, I was really worried.
I wasn't sure what the deal was.
But, then I asked the nurse about it. You know what she said?

"He probably has ICU Psychosis."
ICU a-whatta?
So, I did what every inquiring mind does ... I googled it.

Apparently, it's fairly common.
One in every three ICU patients gets it.
My hubby has always known how to stand out in the crowd.

It will go away on it's one once he is discharged or out of the ICU.
Mix his stress of being here, weird schedule, no sleep with his sedative.
It's bound to give anyone ICU Psychosis.

So, I'm not worried anymore.
Now, I just sit back and chuckle.
And, I wait for it to pass.

Once he is off the sedative.
Once he gets some sleep.
Once he is out of the ICU ...

I will have nothing to chuckle about.
Or, get freaked out about.

(ie: Just now, he's signing something to someone and getting frustrated as he points to his suction tube. He is having a whole conversation with someone, they ask questions, he answers in sign language letters (than don't spell anything) And he ain't talkin' to me!)

*don't think I'm horrible for finding this humorous ... a girls gotta do something to stay entertained in this place!!

It's Sunday!

Even though I'm in the hospital on Sunday, I love Sunday's. I was in Sierra Vista for church this morning and I NEEDED church today. I was getting really close to running on empty.
The High Council Speaker talked today about the pioneers and the trials that they faced. He related them to the trials we all face today. He read a quote that I LOVED ...

"the hardships and trials that we each face are the sacrifice we have to make to become closer to our Heavenly Father and our Savior."

That may not be word-for-word but, it just stuck out to me so much. It makes me look at this trial in a different light.
On my way to Tucson today I was thinking about it and I asked myself ... "If it weren't for this trial, would I be making an effort to involve Heavenly Father in my everyday life, as much as I am now?"

Think about that ... how often to we make Heavenly Father the central part our lives when things are going good? We would all be a lot kinder, a lot more patient, a lot less judgemental, and filled with a lot more love if our Savior and our Heavenly Father were the center of our lives EVERYDAY -- not just the days we are struggling.

Now ... on to the Kameron update! Yesterday Kameron got tired breathing on C-PAP so, they turned the respirator back on. He is on it again today. This is a good thing! They are working on building us his strength so that he can breathe on his own! Baby steps, baby steps.

The doctor's have all been discussing a procedure called, IVIg, which is an Immune Globulin Injection. There are TONS of possible side effects and one of the ones they are mainly concerned about is Kindey Failure. Well, since Kameron is already dealing with renal insufficiency, that worried me a little bit. There are also a lot of good things that could happen from this procedure! Lots of doctor's treat Lupus patients with this drug monthly. Hopefully this will do the trick and balance out everything in Kameron's blood.
Today, they decided to do it. I was panicking a little bit because I was still in Sierra Vista and I hadn't had the chance to talk to a doctor about it yet. But, at church today, a doctor in our ward (Dr. Mayberry) said ... "well, whatever the doctor's say will help him get better." When I remembered this, followed by a quick prayer for guidance, I knew that this procedure is a step in the right direction to get Kameron better. It's scary because it is pretty high risk this first time but, I am hopeful that this will be the treatment he needs to kick this all in the butt.

So ... what they'll do is do this IVIg for 5 days and see how he responds to it. If it WORKS, then it looks like we'll be doing this every month through an IV. Just PRAY our insurance accepts to cover it ... I read online that it can cost around $10,000/dose!!! YIKES! I doubt they'll deny it but still - that's a lotta money!!

Those are all the updates from the hospital. I went and saw WICKED yesterday and absolutely LOVED it! I cannot wait to take Kameron. Kason is still kickin' it with my mom up in Payson. He's such a trooper. And I have been VERY blessed to have the Rasmussen's, here in Tucson, open their home to me. Their house is literally 5 minutes from the hospital. They are such a huge blessing to me! I can't imagine having to drive back and forth from Sierra Vista everyday so, I am very, very grateful to them!!

And, that's all folks! :D Have a fabulous Sunday!

Saturday, July 18, 2009

Saturday update...

Things are going good at the hospital. The pulmonary doctor said that Kameron is looking really good today. He has put Kameron on C-PAP, which means Kameron is breathing on his own but he is still intubated and the respirator is acting as his crutch. Hopefully tomorrow they will pull the tube out. When they intubated him on Thursday his lungs either filled with blood or fluids but, his chest x-ray they took yesterday showed nothing. So, that is good news!

They will also be doing an ultrasound on his pancreas today and also his legs to make sure the blood is circulating okay.

Kameron is doing good. He is such a sweet hubby, even when he can't talk!! I am lucky to have him! And very very grateful that he is making progress!! I know he wouldn't be doing this well if it weren't for all of you. Your prayers and sacrifice to fast have been a huge blessing. So, thank you all! (again and again!)
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Friday, July 17, 2009

back and forth, back and forth

I feel like that's how things are right now. I hear from one doctor that the plasma treatments are working and helping and then the kidney doctor comes in this morning and tells me that the blood doctor doesn't think they're helping at all!
I thought they were helping - just because the plasma they pulled out of him was so brown - it had to be helping him to put in fresh plasma. And he LOOKED so much better after the treatments. But, apparently plasma forises (sp?) isn't very beneficial for patients with lupus - go figure. So, they are going to do one last treatment today and then figure something else out for new treatment starting tomorrow. I could tell the kidney doctor kind of wants to continue the plasma treatment but, the blood doctor decided against it. So ... that's where we stand on that! And too be honest - it might be nice to not have the plasma forises people in here. They try to make small talk and I'm just not in the mood for that so, things just get uncomfortable.

His kidneys ARE looking better but his blood levels aren't improving. They're not getting worse but, they aren't getting better either. That's why they're having to figure out a new game plan - get his blood levels normal! :D His thyroiditis is almost gone (yay! the stupid thing that started this all!). And his pancreatitis is getting better. I haven't heard much about his liver but, since I haven't I assume it's improving. His chest x-rays are back and forth - somedays they're good, somedays they're not good. And his CT Scan of his brain was clear! (Phew!) So ... some things are improving - some are not. It seems like when they try to fix one issue - another one presents itself! I can tell the doctor's get frustrated sometimes because Kam's lupus is SO pronounced they have a hard time treating certain things.

He is still sedated. But, this morning he was in and out of consiousness for a little bit before the sedative kicked back in (they wake him up every morning for a little while to check on his cognitive levels to make sure the sedative isn't affecting his neurological system) and he was trying to tell me something and I couldn't understand what he was signing so he got frustrated - rolled his eyes and flipped me off. *sigh* proof that my old Kam is still in there! haha.

Things are going good though. They tested his breathing capabilities this morning and he CAN breathe on his own but, they want to keep him on the respirator until atleast tomorrow just to be sure. And they'll keep him sedated until then. Good thing too, I bet it's uncomfortable to have a tube down his throat!!!

People ask how I'm doing ... I'm okay. I'm in "survival mode" right now. If it doesn't have to do with Kameron's health - it probably doesn't matter to me right now. I am exhausted all day - even after sleeping for 10 hours. I'm kinda getting sick of cafeteria food but, it's the cheapest food there is. So, I keep eating it. I MISS Kason. He is with my mom in Payson and I miss that little booger. But ... we take it a day at a time and, somehow, I survive each day!!!

Sorry if I don't answer emails/texts/phone calls. I'm a little preoccupied at the time ;)

Thursday, July 16, 2009

The kidney doctor came in and spoke with me this morning. He said that Kameron's kidneys and pancreas are starting to get better. He also said that because his pancreas was not functioning well, they were giving him extra fluids. That may be the cause of him not breathing well .... To much fluid in his body and it may have been affecting his lungs. So, now that his pancreas is doing good they can lower the amount of liquid they give him and hopefully that will help his lungs improve.

They are also doing a CT scan on his brain. This morning Kameron was really confused and his Dr is worried about that. However he said that sometimes high blood pressure can cause confusion. So, hopefully that is the cause and the scan comes back clear.

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A giant leap in the wrong direction

Last night when I left the hospital Kameron was having a really difficult time getting his respiratory rates down. His heart rate was high and his blood pressure was high. The nurse that came in was struggling to get him at regular levels and to be honest, I was a little worried about her being his nurse all night. She was .... A little shakey on her nursing skills to say the least. But, right before I left another nurse had come in and helped get things stabalized. So, I left, praying that things would stay that way.

This morning Kam texted me a told me to get to the hospital ASAP. So, I hurried to get ready and headed over there.

This morning, as of 9am Kameron is on the respirator again. I know its for the best buy, it doesn't make it any easier. It is so hard seeing him like this. But, Kameron had told his doctor that he was just tired of breathing and he hadn't slept well in a couple days. So, they made the decision.

He will be on the respirator for a few days again. He just needs his rest and needs to get better.

There won't be much to report on for the next couple of days. Love you all!
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Wednesday, July 15, 2009

Well, things at the hospital are slowly moving along. The doctors all say that Kameron improves a little bit each day, which is good news. His pancreas is still inflamed but the enzymes are going down. This morning his doctors said his chest x-ray looks good and his kidney function is starting to stabalize. Tomorrow will be the last day of his plasma treatment and they will look at how Kameron is doing and see if he needs anymore treatments, from my point of view those treatments REALLY seem to be helping! So, we are doing good. I think we are both getting anxious to get out of the hospital. Poor Kameron has been in the same bed for a week.

My mom took Kason to her house this week, which has been nice not to worry about keeping him happy and entertained but, I miss that little guy!!

We are slowly moving down the road to recovery and first, getting out of ICU and then getting discharged .... We're gettin' there!!!

I will continue to thank you all for your prayers!! We feel them for sure!
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Sunday, July 12, 2009


They did a procedure on Kameron today where they hooked him up to a machine that took all his blood out (not at all at once, obviously) and it seperated the blood from the plasma. Then it disposed of Kameron's plasma and filtered in new, fresh, donated plasma. Then, when that part was all finished they put all his red blood cells back into his body. It took a total of 2 hours to do it! It was an interesting process though. And all of Kameron's old plasma was almost brown. Good, healthy plasma is a yellow-gold color. So, his was not healthy at all!! They said his blood has too many antibodies, which is one reason he is so sick. So, they will do this process 4 more times (1 time a day) and that will help him feel better. Even today, after the procedure, Kameron looked a little more alert and energized. I am hopeful this will get him well QUICK! :D

Today they also put in a central line. They will start feeding him from that so that he can get all the nutrients he needs. Today Kameron was having some stomach pains that seemed to be pretty awful. Nurse Natalie (whom I LOVE! She's awesome) said it's probably just from him drinking an ensure and not being mobile to be able to digest it. Also, a couple things were passed around about pancreatitis and his thyroiditis. So, we'll see where we go with those. His kidneys still aren't working the way they should. The good news is they aren't getting WORSE - they just aren't getting any better.

We also spoke with a new rheumatologist today, Dr. Howe. She seemed very knowledgeable and seemed to really do a thorough history on Kameron. We are hoping to get a second opinion from here re: Kameron's current lupus regimen.

That's the news for now! We definately aren't out of the clear yet but we are certainly on the road to recovery ... slowly but surely!! I am very happy with the care Kameron is getting at TMC. He has a great team of doctor's and all of the nurses have been awesome.

Again, thank you all for your prayers!! I know Kameron appreciates it and I definately do!!

Friday, July 10, 2009

As of about 10:30 this morning Kameron has been breathing on his own. He is exhausted but, doing well. The doctor said that everything is looking really good. It is so wonderful to hear his cute, raspy voice again!! I am amazed at the miracle we have witnessed!!!
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When I got to the hospital this morning, my sweet husband was awake!!!! They have taken him off the sedative! He is writing to communicate and is very alert. They are going to be taking the breathing tube out later today because he is breathing on his own. His lungs look clear with no infection and is currently just being treated for his staph infection. Its all such good news and I am overjoyed. Thank you all for your continued prayer and fasting. You are all so amazing and we send our love and appreciation to each of you. I will keep you updated.
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Thursday, July 9, 2009

We had a good day today and took some baby steps towards recovery. They were able to unsedate him for a few minutes so that Kason could talk to him. Kameron would show him all his tubes and told Kason that he loves him. Then the sedated him again. The nurse said that all of his vitals are doing really good and things are starting to stabalize. They tried doing a T.E.E., which measures any vegetation or growth on his heart valves but they weren't able to do it today because of the swelling in his throat and Kam would clench down and tighten his muscles. So, they will try that procedure again tomorrow. But, it was a good day. I am overwhelmed with the amount of love and support that has been shown for us. You are all so amazing to support us, again since we just went through this same thing just over a year ago. So, thank you all for your prayers, love and support! I know that Kameron can feel your prayers. And I know that I wouldn't be standing strong without your prayers!! We are very grateful for each of you!!!

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Wednesday, July 8, 2009

My not so new, not so normal life ...

Fourth of July for our family, was spent in the Tucson Medical Center.
While everyone else was grilling their hamburgers and corn, splashing in pools and getting ready for the fireworks, Kason, Kameron & I were in room 780 at Tucson Medical Center. We were together as a family but, we weren't doing the "normal" 4th of July festivities.

Backing up to what got us there ....

On Wednesday, July 1st - we spent the night in the ER. Kameron had a nosebleed that started at 3:30 that afternoon. It stopped for a little while but picked back up and it hadn't stopped by 10:00 that night so, we took him to the hospital. We were taken back quickly and the ER doctor mended his nose. After getting his blood work back the doctor just told us his labs were a little abnormal and his platelets were low which is what caused the 7 hour nosebleed - no platelets to clot the blood! So, they told us to call his rheumatologist and let her know about all of this and they sent us on our way!

Friday Kameron had a rough day. He wasn't feeling well at all, he didn't have an appetite, and his right lymph node on his neck was swollen. We watched him most of the day, tried to get him to eat/drink, and just let him rest. But, Friday night - the swelling in his neck spread. By 9:30 it had spread from his right lymph node to the other side of his neck and all the way down to his collar bone. He could barely move his neck and his breathing started to become very labored. So, around 10:30 we headed back to the ER. Just a quick word of advice, if it can ever be avoided - don't ever visit the ER on a Friday night! That place was CRAZY! Because of the business - we didn't get back into the ER until 1:30am! Poor Kameron was in so much pain and was so miserable. As soon as we got back into the room they got Kam some pain meds and took his labs. As soon as the ER doctor (different doctor this night) saw his results, he knew something wasn't right and he was really worried about Kameron. Kameron's eyes looked a little yellow, his liver wasn't doing it's job right and his kidney's weren't functioning right either. Not to mention - his neck was still so swollen. So, the ER doctor immediately found Kameron a room at a Tucson Medical Center! Around 5am I headed home and slept for a couple hours and around 6am the ambulance came and loaded Kameron up and took him off to Tucson.

While I was home, I packed for my Utah trip and then I headed to the hospital. When I got there a few doctors came in a spoke with us - nobody was really sure what was going on. They knew that his bloodwork looked abnormal, they just didn't know what was causing it all. So, they scheduled several tests that would get us some answers!

That night Kason and I decided to go find some fireworks. So, we told Kameron good-bye and found some fireworks at the base of 'A' Mountain. We missed Kameron so bad, especially as I watched other families spend time together. But, I knew he needed to be in the hospital to get better. Sunday morning Kason and I flew to Utah for a family reunion up there.

Now that I look back, I almost wish that I hadn't gone to Utah. But, Kameron had told me that I needed to go and we decided together that I would attend the family reunion. But again ... I have a small amount of regret for going, especially while my husband was in the hospital. Let me tell you why ...

While I was in Utah, Kameron would text me updates every once in awhile;
"I'm getting a blood transfusion"
"I have to get a liver biopsy"
"everything is fine babe, my doctors are awesome"

Also, when I talked to him he would update me as best he could ...
He had a infection on his thyroid which turned into a staph infection which has gotten into his blood stream.
His heart has an arrythmia.
His lungs have some sort of infection (either fungal/bacterial/pneumonia) and he has fluid in his lungs.

I was missing him BAD. Everytime I would learn that something else was wrong I felt horrible for not being as his bedside but, he assured me that he was doing fine and the doctors were taking very good care of him.

Last night I found out that Kameron was VERY weak, he hardly had the energy to talk. He was losing his extra energy quickly because he was having a hard time breathing. So, once I discovered this - I was anxious to get home to be with him.

This morning they did a procedure on his lungs. (a biopsy?? maybe? I can't remember the term the doctor used). They were doing the procedure right as Kason and I were landing at the airport. We headed over to the hospital and on the way I got a phone call from Kameron's nurse and another call from his doctor. They both explained to me that the procedure had gone well but, because he was having such a difficult time breathing, they had decided to move Kameron to the ICU. They wanted to be able to watch him closer and give him the close attention that he needs. As soon as we got to the hospital Kameron was just getting situated in his ICU room.

When we woke up he seemed concerned that the procedure went wrong and wondered why he was in the ICU. He didn't remember anything (which is a GOOD thing!!) and I explained to him what had happened and why he was there. Then the doctor came in and spoke with us. He expressed his concern for Kameron's high respiratory levels. Normal respiratory levels are below 20 and Kameron's were up in the upper 30s and 40s. So, we discussed putting Kameron on a respirator but, decided that we would wait and see if Kameron could continue to breathe on his own. Kason and I went to get Kason some lunch in the cafeteria. While I was there Matt called and said that they had decided to go ahead and sedate Kameron and put him on the respirator. I rushed back to his room. I was able to tell him I loved him and then they asked me to leave so they could do the procedure. When we were finally able to go back in it was SO hard on me to see Kameron sedated and with the breathing tubes. But, I also know that he won't get better if he isn't on the life support. His body has been fighting SO hard to breathe that all of his extra energy was going into his breathing. His body had no energy to fight all the other problems that were going on. If they hadn't put him on the respirator - he wouldn't get better. By doing this - his body doesn't have to focus on breathing, it can focus on getting better and fighting the infections.

The hardest part for me is not being able to talk to him. I miss getting his sweet text messages and I will miss calling him to say goodnight. It is so hard to look at his life-less body and see tubes down his throat, breathing for him. I look at things of his and burst into tears because I miss him so much. The doctor isn't sure how long he will be on the respirator - just however long it takes for everything to stabalize.

Right before we left Art, Daniel and Matt gave him a blessing. I was reassured that Kameron will be fine. This is one of the trials we need to pass through to enjoy our exaltation.
Kameron opened his eyes for a bit during and after the blessing and I was able to tell him I loved him and he nodded his head. He waved goodbye before falling back asleep.

He is such an amazing husband. So strong and full of faith. I am blessed to have him as my best friend. I know that he will get through this and that he will get to continue his role as a husband and as a father.

This is where you all come in. I know that each of you that have been aware of our situation have been praying for Kameron - for that I am eternally grateful. But, I feel that we need a little extra faith sent our way.
I am asking each of you who reads this to fast for Kameron's recovery and health on


Fast, pray, meditate ... please just do what you do.
Kameron will be healed by his faith and by the faith of others.

I love each of you and I am very grateful for the love and support we have felt. I will try to update as often as possible.

Friday, July 3, 2009

Our Handsome Boy!

We had our friend, Amanda, take some pictures of Kason when she was visiting here.
Here are a few of them. I think they turned out SO stinkin' cute! (it helps will the model is so cute, though!) She was awesome and did so good with Kason. If you need some pictures taken - she's great!!

Kason's Pictures

Thanks again, Amanda!