5 weeks

It was 5 weeks ago tonight that Corys first symptoms started.

We are still at the hospital. Cory got changed to whats called a mechanical soft food diet yesterday. That just means that instead of all of his food being pureed he just eats really really soft food very slowly and in small bites. We have to sit him up as close to a 90 degree angle as we can so that it is easier for him to use gravity in controlling the food in his mouth. He seems to really enjoy eating it and we are even noticing that with his taste that has come back that he might be more sensitive to taste; just like he is really sensitive to touch. He doesn't want me to put salt on anything and thinks everything is delicious.

Unfortunately every time he eats he gets a headache and doesn't feel very good. So that's why we are still in the hospital. They just want to make sure that he does ok with the food before they send him back to the other facility. He still has his g-tube just in case something goes wrong but so far so good.

He also still has his trech but it is capped full time now day or night. I believe that they are waiting until he can eat "normal" food without aspirating before they take it out.

Cory has been very emotional the last few days. He really gets down on himself because he thinks that he should be doing better. But I want all of you to know that he really is doing well. We just have to help him see and know how good he is doing. So my job lately consists of constant encouragement.

His left calf has been really really sore for a few days and he feels like he probably hurt it some how.

We are still hoping to move to the rehab center this week so lets keep our fingers crossed that we make it there.

Yesterday.

Sorry I didn't post yesterday I have come down with a sinus infection so I have been feeling a little under the weather my self.

Anyways, the CT scan of Cory's chest came back clear. He does have what is called atalectisis which is not that big of a deal it just means that there is some leftover stuff from his pneumonia. Unfortunately we had to stay another night because they wanted to do another CT scan today of his stomach to see if they could pin point the pressure and pain that Cory was experiencing. He just got back from that procedure and we should get the results back shortly.

Yesterday was a pretty relaxed day. Since we got here to the hospital they have been giving Cory a new pain medicine that has been working wonders. He has been really comfortable so that's a plus. Cory feels like his trunk exercises have been helping a lot. He even said that sitting up on the side of the bed in PT yesterday was a lot easier. So over all as far as the GBS is concerned he is making some GREAT progress.

Well the Dr. just came in and said that the stomach CT looks good. So we are thinking that the pressure and pain that Cory was experiencing was from starting on a puree diet, and or his feeling coming back inside his body.

We will probably go back to the skilled nursing facility for the weekend and then on Monday they are wanting to move Cory to the REHAB FACILITY!!!! Yeah we are really excited that we are another step towards our goal of bringing Cory home!!!!

Thank you for your prayers...they are working!!!

Ok so I wasn't going to write about this but Cory thinks I should.

So last night I came to the hospital to drop off some stuff to Cory and while we were talking about the day he told me that earlier they had a fire drill and when that happens all of the patients doors close automatically and it was really scary for him. We even joked that if there was a real fire that there was no way that he would be able to get out of the hospital and he would die.

As I was leaving it was about 10:30pm and I was waiting in the elevator hallway and all of a sudden...yup you guessed it...the fire alarm started going off...and yes the "fire doors" started CLOSING in on me in the elevator hallway....And I was like "o heck no I am not going to be stuck in the elevator hallways by myself" so I make a mad dash for the waiting room before the doors close. Well it didn't do me much good because the waiting room was also all blocked off. So I am standing there trying to look in the window to the nurses station and the nurses are looking back at me like I am some crazy person. Then on the loud speaker they announce that the smoke alarm in the break room on level two is what sounded So I start thinking. "o great some appliance blew up and this a real fire" I started freaking out. And out of no where a construction worker comes into the waiting room and asks me if I know what to do and I say no but do you know where the stairs are and hes like ya follow me.

Let me interject here. First of all we were on the 6th floor. Secondly he was a younger like 25 year old Mexican with a really strong accent and I could barley understand him.

So as we are RUNNING down these flights of stairs a few thoughts are running through my head. First I am saving myself should I be going back to try and save Cory haha and second this probably isn't the safest thing for me to be doing being in a stair well with some strange man. O well I just kept running. So after checking every floor to see if the doors we unlocked yet we finally got down to the lobby and the security guard tells us that it was BURNT POP CORN!!!! OMG I could not even believe this. So I tell the security guard that I was parked at the ER entrance and asked him where to go and he said well its a long walk but go to the right and follow the building around. So George or Jorge who knows which because he was Mexican said that he was parked in the same place and so we started walking. So Gorge was talking my ear off the whole time, he was really nice but I could barley understand him and the words that I did understand was the "F" word every other word haha WOW!!! Finally we hit a dead end. Luckily there was a nurse there that said we were sent the wrong way HAHA. Also she asked if we had been locked out and I said no we were locked in and she said o no if the fire marshall even knew that we broke through "fire door zones" the hospital would get fined a bunch of money...I wanted to say WHATEVER lady I wasn't going to get burned to death because of your FIRE ZONE CRAP hahah.

So George and I turn around and walk all the way back to our cars. Wow it was quite the experience. Then when I got to my car where I had left my phone I called my sister in law who was in the room with Cory and told her what happened and she just started laughing because they were just chillin in the room.

Good times. I hope that story made enough sense and you got a good laugh.

xoxo

I swear....

Well my dad would tell me "Chaney don't swear" but seriously life is weird....

Yesterday there wasn't really too much to report so I took a day off from the blog. The only really significant things that happened was in PT Cory sat on the side of the bed and did some trunk exercises to try and strengthen his "core" muscles. And then the really exciting thing that happened was during speech therapy she decided that he is doing so well that she started him on a puree diet. So he was able to start getting food trays...he has done really well on it too. The food is a little scary looking and he doesn't really touch the mashed up bread haha but really who would.

Then today, again, was a pretty relaxed...until....

I went home for about an hour and Cory's mom called me and said "Somethings wrong with Cory he is having a lot of pain in his stomach and he is having trouble breathing"

So here we go again...I rushed down to the hospital and about 20min later we were on our way back to the hospital.

I am literally sitting here in the ER right now with two nurses pushing IV meds in and the other one is trying to get another IV line into Cory's other arm. They did an x-ray and an ultra sound and a urine analysis because there was blood in his catheter when we got here and everything came back ok. But they are going to do a CT scan in a few min because his lower left lobe in is lung still has a weird spot in it. So I will post tomorrow the results of that.

I must say that I am scared right now. I am sure everything will be fine but the unknown is always terrifying.

Cory is not too excited to be here but he is most disappointed that today was shower day and he missed it. haha.

rough morning...

So the physical therapists called me this morning as I was on my way out the door and asked if I could bring Cory some CLOTHES!!!! because she wanted to take him into the gym. Thus far Cory has been wearing the all too fashionable hospital gowns and I am not gonna lie he really likes it haha.

Anyways, I ran back into our room and grabbed the first shirt, b-ball shorts, sneakers and hat (of course) I could find and raced to the hospital because I was so excited for Cory to get to go to the gym.

The PT had decided to go work with some other patients before I got there so Cory and I had a few min. to talk and he told me about his rough night he had. Yesterday I mentioned that during PT that Cory's IV just popped right out of his arm for no reason...well...it did it again!!! So I guess last night they had to call in a specialists and it took her another 4 tries and Novocaine which didn't even end up helping, before she could place what they call a "mid line" in his arm. Cory said that it hurt really really bad. His poor body has been through so much in such a short period of time. Hopefully after tomorrows x-ray we will be able to see if his lungs have cleared up enough to stop the antibiotics completely and maybe ditch the IV for good. Lets keep our fingers crossed.

So, PT came back in and we got Cory in the crane machine I talked about yesterday and hoisted him into a "Geri" chair and rolled him to the other side of the facility to the gym. We had to wait in the gym for a few minutes for another PT to come help us and in the mean time Cory began slipping out of the chair so we had to keep lifting him back up into it. Then we got him over to the standing machine and the PT asked me if he had any shoes for him and so I had to run back to the room to get his shoes. Next, we tried to put his shoes on but they would not go on and after about 5 min of trying Cory offered up some advice that we should probably take off the HUGE hospital socks with grip on the bottom. DUH!!! we were so dumb and so after we did that the shoes slipped right on. Lastly, it was time to stand Cory up so...before we put Cory in the Geri chair we had a belt placed under his bum so we strapped the belt onto the machine and cranked Cory into a standing position with the belt supporting his butt and his arms were on a large tray type thing. Unfortunately the PT forgot to raise the tray part of the machine up and it was on a setting for someone 5ft tall not 6 ft tall so as he was on the machine we had to try to lift the tray up with him still on it...ugh...it was such a fiasco. Finally, only after about 3 min. of standing Cory was DONE his face got really pale and he started sweating so we had to sit him down quick. So that was it for PT for the day.

Cory was really really emotional after getting back to the room. He is so scared of how hard his recovery is going to be. He really can't see or literally FEEL how well he is doing but he really is making so huge strides. I just have to keep reassuring him of how well he is doing. I know that if Cory could just stay positive he will be a lot better off. When his mind is in the right place he really does make incredible steps forward.

The rest of the day was spent RECOVERING!!! Cory had a few friends come to visit which was really nice for him. His sister spent the afternoon with him and then tonight his Dad had a shift and he brought a little refrigerator that with the help of his sister is now fully stock piled with apple sauce, yogurt, chocolate milk, and pudding.

I am starting to laugh because we have seriously "MOVED IN". Between the huge lazy boy chair and now the stocked fridge Cory's room has become quite the hangout. Cory even mentioned that his nurse (who we love to pieces) yesterday was pulling a 16 hour shift and came in a couple times just to rest in his chair. haha

As most of you know Cory is quite the people person and he has seriously captured the hearts of the people caring for him. He is really making such an impression on the lives of these people. Most days when I go in he will be surrounded by more than one nurse or therapists just enjoying a good conversation about life. It was really hard for us to move to this new facility but we knew it was what we were supposed to do. I am beginning to see why. God works in mysterious ways and he is defiantly using this hard experience for Cory to touch the lives of many people.

Memorial Day

So this morning I woke up to a phone call from the facility where Cory is at and, I seriously get so nervous when they call. However, this morning it was ok. They called to say that today Cory was scheduled to get a SHOWER!!!!

Now, I have to interject a few background facts here. First of all, Cory LOVES showers probably more than anyone reading this blog...seriously...in fact, if you are in our old ward you probably remember when we first moved in we were asked to speak one Sunday and, who knows what the topic given to us to speak on was, but Cory, trying to make a point and use an object lesson, spent 6 of his 15 mins of his talk describing his morning shower in great detail and that talk or rather, that part of the talk, was NOT forgotten by anyone in the congregation that day haha. He has a strange love affair with his showers and most days takes more than one and some days if time allows more than two and when we were sick with the flu as a family before this very ordeal he was...no joke...taking FOUR SHOWERS A DAY... because he said it was the only thing that made him feel good.

Second fact...Cory hasn't had a REAL shower in 3 weeks. They have been giving him bedside sponge baths but come on how many times can you put leave in / no rinse shampoo on a persons head...I really don't think that's very sanitary.

So now that you have the facts let me describe the shower. First of all when they called me this morning they said that I was allowed to bring Cory his own shower supplies if I wished. So you better believe I went to the store on my way this morning and bought EVERY good scrubbing pad, scrubbing gloves, lufa, yummy shampoo, shower gel, anything that I could find that might be beneficial for this event.

Next, Cory and I both when we heard that he was going to get a real shower we were wondering how the heck they were going to pull that off since he is still mostly paralyzed. So this is what they do. They bring in a human sized sling and put it under him and attach it to this crane type machine that has a hydraulic system and pick him up and he looked like a baby in a blanket and the stork was going to drop him off. Then they roll him over and set him down on this bed made of PVC pipe and this weird foam cushion stuff and they un hook him from the crane and roll the shower bed into the shower room. Now the shower room has just been newly remodeled and it was gorgeous. The whole thing floor to ceiling is beautiful tile and they have one huge stall with two shower heads and if he got cold they had heat lamps that we could turn on.

So lets just say the scrubbing began and Cory said it was heavenly to take a REAL shower. (who wouldn't want to just lay in a shower and let someone else do the work...I know that most mornings I would love that haha) so that was Cory's first real shower extravaganza. And let me tell you he felt and looked and most importantly SMELLED like a new man.

As far as the rest of the day went...

Cory sat up in his leather lazy boy that his brother was kind enough to bring down for him. Then during PT on his legs Cory's IV just popped out of his arm for no reason so they had to try to put it back in and it took 4 tries to put back in because his veins are seriously "shot".

Also, after I went home this afternoon, I got several pic. messages from Cory's brother and sister of Cory practicing his writing skills on a white board and it wasn't half bad.

And finally when OT came by, he is the head of the rehab department at the facility, he couldn't believe how well Cory is doing and he said that tomorrow when they have their meeting with the Dr. and Case worker that he is going to push for Cory to be moved to the acute rehab facility sooner than expected.

Wow, what a full and AMAZING day its been. All I can say is THANKS to each and every one of you for yours Prayers and Thoughts. I know that is what is causing all of this good news and speedy recovery. I know we still have a ways to go but I am in awe at all of the good things that have been happening lately.

work

So not too much has happened in the last two days. At this new facility PT and OT take the weekend off so Sat. and Sun. Cory gets "CT" aka Chaney Therapy. And let me tell you what we have made some huge strides haha. I have just been making sure that Cory stays limber in all of his joints and muscles. He says that he is in a lot of pain now. I hope that's a good thing meaning that he is getting feeling back. I don't know for sure though.

Cory has been enjoying being able to swallow. He has now had 3 chocolate shakes thanks to his brother and my dad. And two Bahama Bucks Shaved Ice (strawberry, in case you were wondering). He has been sipping chicken broth too but tonight he got really bad indigestion and threw up in his mouth. He isn't too happy about that. He is still getting the majority of his nutrition through his g-tube but as he starts to eat more with his mouth they will start to turn down the amount of food through his g-tube.

So, earlier this week after the bloody trech episode and the trip to the hospital Cory received his "speaking valve" that plugged his trech hole so that Cory could talk. Even though Cory at that time was taken off the vent he still had oxygen that was giving him quite a bit of air. Also, even though Cory had the speaking valve, which could be taken off and on, he was still breaking through the trech in his neck. Today however Cory received a "trech plug" which now requires NO OXYGEN and Cory is now breathing through his NOSE and MOUTH. When the RT first put on the plug Cory was freaking out a bit because he said "I think I can feel the air passing through my nose hairs" haha that cracked me up. I guess I should probably trim those for him (I have never done that before so we will see how that goes haha)

Speaking of things I have never done before, I have to tell you I have become quite the face shaving pro. Its amazing how much harder it is to shave someones face compared to your own legs. But thanks to Cory's best friend I even got the technique of putting a cold wash rag on after. I never knew that guys faces got hot after a good shave.

Anyways Cory got quite a few visitors today. He has had several extended family members fly in to see him and and even though its been under such horrible circumstances its been very enjoyable to visit all of our family and friends that have come to support Cory. All of the love that has been shown is really whats been getting Cory through this. So, thank you to everyone that has come a supported Cory.

Cory is really getting strength back in his upper body. We are still a L O N G ways away from "normal" but in "CT" we have been working had and it is paying off. I am going to try to talk to the case worker over Cory either tomorrow or Tuesday to get more of a plan to see what the future holds for us so lets keep our fingers crossed that we will be able to move on from this facility into a more intense rehab facility soon. Cory is ready to start working hard....I told him his arms are the same size as mine and so he wants me to bring in a measuring tape so if I remember I will post those results. haha

Are you ready for this....

Well you know how yesterday I said that the speech therapists was going to come back today and see if Cory would be able to pass his swallow test. She came back today and she had vanilla pudding and ice tea for Cory to try and just see if he was starting to get his bulbar function back. We all were very skeptical and really weren't expecting much to happen. In fact Cory told his aunt this morning who came to visit that this disease has been so hard and everything that he had been through has seemed to always be the worst case scenario so, he didn't think this test was going to be an exception and he was prepared not to pass the test today.

Back to the food that was going to be used to pass the test. Well some of you might have noticed that on the sidebar of this very blog we have listed Cory's "FIRST MEAL" and one of the items listed is DIET COKE not iced tea...the ST (speech therapists) was not able to find any diet Coke so Cory, as sick as he is, turned to me and said "didn't I see a soda machine in the court yard" haha I swear Cory has an amazing sense when he wants to. You have to remember he is in a bed and can only see a little part of the outside but you better believe he saw the coke machine.

So out I went to find the DIET COKE!!!! and find it, I DID!!!!

The ST put some blue dye (just for the record she did not skimp on the dye, he still has the blue lips to prove it) into the pudding and off we went. After three big scoops of pudding we called in the RT (respiratory therapists) to suction out his lungs and see if any of dreaded BLUE DYE went into his lungs and guess what...

IT WAS ALL CLEAR!!!!

So now Cory can EAT...YEAH!!!!! O and the best part, he can TASTE and he said it tasted like it was his first time eating food ever....

Cory is sooo excited and grateful for his new ability to swallow again. He has been expressing how appreciative he is of everything. Now he is excited to be ALIVE and wants to experience everything life has to offer.

You can't make this stuff up....

Every time I think the blog might be getting boring Cory sure likes to make the climax of the story get just a little bit sweeter. The last 48 hrs. have not been an exception.

Well besides the fact that Cory and I are soooo excited that Kris Allen won American Idol. whoot whoot We have had a little bit of our own excitement to celebrate.

Yesterday morning when I went to the facility Cory had acutally had a really good night but his trech site every bloody since we arrived on Tuesday has been bleeding pretty bad ever since. Our nurses and respetory therpists really tried hard all day to try to get the blood to clot and stop the bleeding but after 13hrs of trying to stop it we decided to go ahead and take Cory to Mercy Gilbert to have a pulmanary dr. look at it.

So I got to have my first ride in an ambulance and went with Cory to the hospital. We arrived in the ER and the dr. looked at it cleaned it up and decided that it was bleeding inside further than he wanted to mess with so he recomended we go back to Mayo and have the dr. that performed the trech. fix it.

By this point it was about 3 am and I was fading fast because the day was so emotional and long. So my dad who had followed us to the hospital went with Cory to Mayo and I went home.

So my dad said that Cory did pretty well on the ride per a good dose of morphine. At mayo the dr. who performed the trech surgery decided that he needed to cautarize both sides of his thyroid. My dad was lucky enough to be there for the whole thing and he sad "it didnt smell like baccon it was more like burning hair, but it was really cool to watch" haha he is a crack up. Anyways the Dr. also felt like Cory was breathing pretty well on his own so the decided to try taking him off the vent for a while and guess what.......

HE HASNT BEEN BACK ON IT SINCE!!!!!

WE are sooooo excited....so Cory is now back at his rehab facility and when his plug is in his trech he is able to talk up a storm (but it does make him pretty tired).

Wow!!! what crazieness we have been through...I really did think we were going to loose him again last night but GOD in REAL and he DOES ANSWER PRAYERS!!!!

O and I am home for a bit right now but I just found out our facility we are in has been under rentovation so its a little bit in shambles right now but they are moving us into a newly rentovated room right now and he has a GREAT view of the court yard...another tender mercy.

My little brother who is there now just texted and said that he was doing "very impressive" things in PT even being as tired as he is and he is wiped out now but that tomorrow they are going to try and see if he can eat...

SOLID FOOD!!!!

I am not going to lie all of this good news is getting a little overwhelming for me...but I am sooo grateful for everything.

WE MOVED!!!!

Yup that's right we finally made it onto the next step of this craziness.

They started Cory on a different sleep med. last night and he said he was actually able to get some sleep. Unfortunately whenever they give him a new sleep med. it seems to work for about one night and then it doesn't work again for him. This morning Cory was able to get on the tilt table and in a chair both, for a total of about an hour. Sadly at about 11am he said he was already feeling like he over did it. PT really can wear him out if hes not careful. There is a very fine balance between pushing Cory enough so he gets stronger and pushing him too much and actually causing more damage.

It was also confirmed this morning that Cory does have another infection in his lungs and so he was started on another round of antibiotics.

Then at 11 am today the nurse came in and told us the the EMT was going to be there at noon to transport Cory to his new "pad". We had no idea that we were going to be going today so it was a little bit of a shock but I think it was good that Cory didn't have much time to work himself up about the actual move. So Cory experienced his first ambulance ride (no sirens of course) and I was sure to take lots of pictures (per Cory's request). It was a bitter sweet farewell to the people and hospital that we have been for the past 2 1/2 weeks we really know that we got the best care possible but, we also know that this move was what we need to do now. (as scary as it may be)

Cory said that he was really weirded out being transported. He feels like its a dream and when we got to the new place he was really emotional. We have heard that this disease can really affect your anxiety levels and it has for Cory. He gets stressed really easily and it takes a while and usually some meds. to calm him down when he gets too worked up.

So since we have moved to a new facility its not quite as strict so if you would like to visit Cory please e-mail me at corysvisitors@gmail.com and I will give you the information you need to come see him. Cory really would love to see people he just wanted me to let everyone know that because he still has his trech with the cuff inflated at the bottom he wont be able to talk to you or really communicate with you unless you are a master like me at reading his NO moving lips haha.

When I left Cory tonight he was resting but I know that the move today was really really hard on him so please continue to pray for Cory's peace of mind. Also Cory requested that people pray for a speedy recovery of his lungs so he can get off the trech. (he really hates it).

xoxo,
Chaney

ho hum....

If its not one thing its another...

Well we found out that the new place that we are moving to has an open bed hurray right?...wrong

I swear its a new adventure every single day I arrive at the hospital because there is a whole 10 hrs. at night that I haven't been updated on. Soooo....I guess last night Cory was having a hard time digesting anything which they are telling me is no big deal except for the fact that he is also having a lot of gas building up in his tummy that he isn't being able to pass so it just sits in his stomach (causing a lot of pain) until they take the biggest syringe I have every seen and suck the gas out through his g-tube. I don't know about the rest of you but that seriously fascinated me for some reason.

Anyways, Cory also had another sleepless night and then for some reason (I forgot to ask why) they decided to draw some blood (since they already took out his pick line and his art. line in prep for transfer to the new facility they had to do it through a normal vein) and they found out that his white blood count is elevated AGAIN!!!! So they are doing some cultures and have decided to keep him in Critical Care until they can rule out the cause of a new infection.

If its not an infection they are thinking that the rise in white blood cells could be due to stress from yesterday trying to turn down the ventilator. I didn't know this but I guess they said that he was on vent trials yesterday and they said that he was breathing on his own for quite a while with very limited support. However he didn't do so well so they had him on heavy support again today.

He was up on the tilt table again today for about 15min so I am told...PT came a little early today so I missed it. And then in OT Cory brushed his own teeth...YEAH!!! He has been practicing his control in his arms and his right one is really starting to show some big improvement.

Cory wants me to come back to the hospital tonight to "train" a friend that is going to take a shift, how to take care of him. HAHA he is too funny for some reason he gets scared that people that haven't taken shifts wont know how to understand him or take care of him right. So I will be heading down to the hospital again tonight.

tired

Cory was very tired today. He said (using our outstanding lip reading skills that we have developed) that he over did it in PT yesterday and his muscles are very sore today. I am noticing that as time is going on and, some of his feeling is coming back that he is very very sensitive to things. For example, he doesn't have much control of his arms (its getting better though) so yesterday after he lifted them up to try to touch his nose he was laying his arm back down on the pillow and his hand came down a little faster than he anticipated (which wasn't very fast to you or I) and he felt like he smacked his hand on the rail of the bed and it brought him to tears literally. I think that as his nerves come back and begin to heal that maybe for a while they will be sending the wrong, or different, signals to his brain. I dint know if that's totally true but another example of this is when I rub his feet at times he says it feels like they are on fire when I touch and other times it feels like shots of pain. But all in all touch = pain for Cory right now. With the exception of his head...he LOVES it when we rub his face with a wet wash cloth and scratch his head. He says that where he has the most feeling.

I am not sure why but Cory has been so HOT lately...o ya maybe because its like 110 degrees outside alreay. But ya, he is loving the fan (except for the fact that its drying out his eyes even with the millions of eye drops that I put in them). And, he is loving the ice pack behind his neck. But seriously he is really sweaty all the time, I think hes just trying to freeze me out.

We are still not moved to the new facility yet so hopefully tomorrow. Today, other than Cory just being tuckered out, not to much went on. His grandma from Utah was able to come down and see him. Also, Sundays bring lots of family and visitors so that always helps the days go by faster. I think Cory's favorite part of the day was when we brought the girls to see him. The one exciting part about moving to the new facility is that we will be way closer to home and its not as strict as the Critical Care unit, so more visitors will be welcomed and NEEDED!!! So hopefully Cory will be able to see his girlfriends (R & S) a lot more during the week.

I feel a little bad that I might not be seeing and recording as much progress as I should but when I am there all day everyday I guess I miss some of the little changes but everyone who comes in these days that haven't seen him for a week or so say that they are amazed at how much better he looks to them. (it could be that they aren't drugging him nearly as much as they were now that he is on the trake instead of being intubated down the back of his throat.) So that is encouraging to hear.

Still Waiting

They gave our bed away...yup that's right the bed that we were supposed to get at the new facility was given away last night so we are still at the Mayo waiting for a bed to open up. We actually didn't even know that they gave the bed away until about 3pm. So poor Cory, who whenever we schedule something, had really got his hopes up and was all psyched to go and then they came in and told us the bad news.

From my stand point I am really happy actually because I was nervous to move him only after really 2 uphill days. So for me the fact that Cory will be under more watchful care for a few more days is GOOD NEWS!!!

As far as Cory's improvement I think we have hit the plateau. He really isn't having any significant changes in the past few days. He does still have the trake in and they are slightly lowering the levels to maybe start weening him off. Other than that no big NEWS per say to talk about. PT did get him back on the tilt table today and Cory loved it. He says its so good to be up and it makes his breathing a lot easier but he still only can tolerate about 15 mins max. His strength and control in his upper body is still there and not decreasing so that is still good.

That's about it for today. Hopefully tomorrow a bed will open up and we can start, for Cory's sake, moving on.

ok day

So today was an ok day.

Cory as of this morning still had his feeding tube in his nose until the g-tube in his stomach reached the 24hr mark and was able to be used. So this morning as Cory was trying to exercise his arms he still doesn't have much control of them, he accidentally pulled out the nose feeding tube and so the had to put it back in. sad, but they said he did well.

Cory only got about 3 hrs of sleep so he was pretty tired today and wasn't as strong as he was yesterday. It probably didn't help that he wasn't able to start the tube feed back up, from yesterdays g-tube surgery, until today at 3pm.

Other than that there has not been any significant changes today. The lower left lung still looks like it has junk in it but they are sure that will heal. And his strength in his upper body is still there but not as strong as yesterday. Still not much going on in the lower half of his body.

However, the doctors said that they feel confident enough with his stable condition and improvements that he has shown that we have decided to move him to a new facility that accommodates respiratory patients along with rehab and physical therapy. We are a little scared and hesitant because we know that it will be a lot different than where we have been but, we want to be hopeful and positive so that we can get out of there quick and onto bigger and better things.

Please pray that Cory can get of his vent soon and that we can have peace of mind while transferring and staying at the new facility.

xoxo
chaney

Rubi and Da Da can't wait to play and swim and fly together again.

G-tube

Well they decided since they don't feel like the feeding tube is going anywhere anytime soon that they are going to go ahead and take it out of his nose and put it directly into his stomach. He is in the OR right now getting that procedure done. They call it a G-tube.

Some good news today...as I was driving to the hospital the nurse called me and said that Cory was asking if I was planning on coming to the hospital (haha he is such a weirdo I come everyday at 9 am because that is when visiting hrs. start and I havent missed a day yet) anyways and she said that the case manager that is over Cory wanted to speak to me. So I got super nervous because first I thought "o great Cory is already asking for me this must mean that it was a horrible night AGAIN" and secondly "o great they want to talk to me about insurance and I am going to have to battle that now too"

So, when I got here Cory was...are you ready for this...He was is such a GREAT mood. I couldn't believe it. I guess they gave him some miraicle drug and he was able to get 6HRS OF SLEEP!!!!! FINALLY!!!!! Also, PT was there when I arrived and they sat him up in a chair and he loved it. He sat for a good hr. It was amazing. And for some reason the pump on his trake wasnt filled ( i really dont know what that means) so Cory was able to figure out a way (dont ask me how) to talk to me. So for a few min. before the nurse walked in a figured out that the pump wasnt filled we were able to talk again. O man it was so sweet to talk to my sweet heart. I have missed him.

And Corys strength in his upper body has really improved so much. He was wiggling back and forth in his chair like he was dancing. Sandly still not much improvement in his lower body but hey we will take what we can get.

Now I know you are dying to know about the case worker part. Well we are good to go on that front too. What a BLESSING!!!!!

The Critical Care team also talked to us about moving Cory to what they call an "acute care facility" which is a good thing because that means they can see enough improvement for him to be able to start on the road to recovery. So I will be visiting the different facilities tomorrow to decide where we go from here.

WOW!! Is all I can say. I know that we still have months of recovery ahead of us but I am just so glad that we are at least not still going downward.

THANK YOU THANK YOU THANK YOU!!! I have felt every prayer that was said for Cory last night about his peace of mind...He was like a new person today. Please keep praying for him.

xoxo-
Chaney

more from today....

this is Chaney...ice chips Cory wants ice chips...and poor guy cant have them yet because he is still not able to control his muscles inside his neck and throat. I am not going to lie I think I might have caught him chewing a few...I swear I don't know how they jumped out of my cup into his mouth. :( even though he has an IV drip with fluids and a feeding tube he is so thirsty.

A close friend of ours was able to come take a shift today which was a lot of help. Also, this afternoon he was able to get a few good naps. However, while he was sleeping his heart rate sky rocketed. It was getting into the 130's and he spiked a fever at 102 so they are doing some blood tests to see if something else is wrong.

Cory has really been down today and I hope its not because he knows there is something else wrong, which unfortunately he is usually right when he tells me there is. So we will see, hopefully later tonight we will have the blood tests results back.

Cory did get the trake put in yesterday and he is still recovering from that. Because the trake is still full time connected to the ventilator we are having to come up with clever ways to communicate. We were using a communication board but he is no longer able to see the board clearly so, we have found that the best method is to play 20 questions. I just start from the top of his head and work my way down and eventually I ask the right question and we are able to address the problem. Cory had wanted me to make flash cards but I think using those would take just as long as this method. Maybe tomorrow I will get adventurous and play the game backwards starting from is feet up. :)

I just want to say it again to everyone. Thank you from the bottom of our hearts for all of the prayers, love and support. I know that is what is keeping me buoyed up throughout all of this, and Cory can feel it too. Love to ALL!!!

-Chaney

This afternoon Cory made some strides with his physical therapy. So here are the high points:

*He has some movement in both arms from his forearm to his hands, it isn't much, but on Sunday he couldn't move anything. With his right hand he was able to grab his moistening "lollipop" and get it pretty close to his mouth. This is HUGE.

*He can slightly raise one of his eyebrows.

*He was strapped to a tilt bed and they were able to get Cory all the way to a vertical position. I guess this is hard for the body to handle. He made it 10 min. which is pretty good. Chaney said at that point his body just crumbled.

Our sister in law was visiting when Cory was on his vibrating bed. When she saw it she said he was lucky cause in cheap motels you have to pay for that kind of ride. The nurse grinned at her and couldnt believe she said that. She asked if Cory thought that was funny and Chaney said she didnt know cause Cory cant smile. Then she asked Cory if he could smile. He managed a twitch by his mouth. We will call that a success.

They have Cory in special boots at night to help his feet stay in a flat upright position so he will have an easier time walking during his recovery.

While these are all good things and the doctors are encouraged, Chaney said Cory was in low spirits today. He doesn't seem to feel he is making much progress. His body still doesn't feel right to him. Pray for Cory that he can be comforted throughout this process. Pray that he can find peace in his trials.

Last night Chaney got a call from Cory's sister in law Stephanie that his blood pressure had spiked, his eyes were stuck open, and he was scared and asking for her, so she rushed back to the hospital. I have to stop and add the fact that Steph being with Cory was a tender mercy. In critical care, everyone gets kicked out of the room at 6:30. They are very strict about this policy. Steph decided to stay with him until the nurses came to kick her out. It was 6:45 when Cory experienced this episode and so he would have been alone. That said, they doctors think Cory was experiencing a side effect to an anti anxiety medicine they had given him. Apparently sometimes the body can freeze in strange positions on this medicine. For Cory it happened to be his eyes. Not sure why his blood pressure spiked though. So they cave him a benadryl ointment for his eyes and shut them for him. He still struggled to keep them shut. Then they gave him two rounds of blood pressure medicine because the first round didn't help at all. He also got some ambien to help him sleep. Chaney is just on her way to the hospital this morning so she will let me know this afternoon how his night went.
Cory is not so convinced that what happened is just a side effect. He thinks something else is going on in his body. The hard part about that is he is usually right. Cory seems really in tune with his body and usually knows if something is wrong a good day or so before the doctors figure it out. Lets hope Cory is wrong this time.

So I have a few more tid bits from yesterday. When the physical therapist came in to work with Cory, they sat him up twice. The first time he had a sharp pain in his side so they laid him back down. The second time they sat him up he had a pain in his bottom. It took a lot of work on the therapist part, but getting to sit up for even 30 seconds was a good thing. Last night before Scott left, Cory begged him to stay. His sedation medication had been lowered and he was having night terrors again. He really hates being alone at night. Scott was able to get the sedation meds increased before he left for the night, but he had a hard time leaving his brother.

Around 2am Cory woke up having a really hard time breathing. He has a big nurse buzzer that they place on his chest, and I didn't know this but he has had movement on his right side from his forearm to his hand, so he was able to reach the buzzer and call the nurse. They took him for a CT scan and it was clear. They did an ultrasound as well and found that his lower left chamber in his lung had collapsed. So yes he will get his tracheostomy today at noon. Because they were going to do it yesterday, they had taken Cory's feeding tube out at midnight the night before. I know he still did not have it put back by noon yesterday. I still am not sure when or if they put the feeding tube back in, so he was a little deprived of nourishment yesterday in prep for the trech he will be getting today.

When I was on the phone with Chaney getting the update, the ultrasound tech was in checking Cory's legs for blood clots. Everything seemed to check out fine there. His liver levels are slightly elevated, so they are just checking everything to make sure there are no other complications. So far, so good.

The New Bed

Yesterday I forgot to mention that they moved Cory to a vibrating bed. I guess this is part of his physical therapy. Chaney saw it for the first time this morning and was laughing cause the first 10 minutes they turn it on it basically beats him and she said he just bounces all around. The last 10 minutes it just vibrates which is good for his muscles. We asked him if he likes his new bed and he nodded yes. For the first time today Chaney was able to play some music and it was soothing until the phone conversation Chaney and I were having became too much. He was getting anxious, so Chaney had to say good bye to me and the music. The doctors are going to do a few more respiratory test today to see if Cory is getting any stronger. If that is the case, which they seem hopeful, then maybe....just maybe they can forgo the tracheotomy. I think they are at least going to hold off today anyway. It is early and things could change, but that is where things stand right now.

Mothers Day

This morning Cory's brother Scottie took the early shift at the hospital so Chaney could come to church and listen to her little brother give his talk after returning from his mission last week. As Chaney was getting ready to leave for the hospital, Scottie called and told Chaney she needed to come asap because the doctors wanted to discuss replacing the ventilator with a tracheotomy. This news was hard to hear, even though it is better for Cory. After learning all the pros and cons the decision was made that he will receive the tracheotomy tomorrow afternoon. The sooner you can get off a ventilator, the quicker the recovery, the less damage is done to the vocal chords, and physical therapy will go more smoothly. Chaney mentioned that she is glad Cory will come out of all this with a battle wound to always remind them of this struggle.

Rubi got to go down with Chaney and love on her dad. Even though he is not the same, her spirit is always lifted when she gets to see him. It is amazing that this little 2 year old is so strong, to not be intimidated by all the tubes and doctors, and smells, and machines. She sees her daddy through all of that and loves him. What a sweet precious child.

Cory was very awake and alert today, which is not good news for him. He would rather just sleep and let his body fight this disease.

He was surrounded by his family today, and every day. His parents, sister Becky, brothers Scottie and Ty along with his wife Steph and their two kids were all there. Chaney also got a visit from a dear friend from their last ward. That really lifted her spirit. I'm sure this is not what Teresa had in mind for mothers day, I know it wasn't what Chaney had planned, however all are grateful to spend time with Cory and support him through this.

Just a side note, Cory's brother is really stepping up and even remembered to make sure his brother didnt forget his wife on mothers day. Chaney really loves the heart necklace, it rocks! Good job Scottie!

This is what he's fighting for...

A Glimmer of Hope

I just got the call for today and FINALLY we have some good news!!! The Occupational Therepist was just working with Cory and not only did his periphrial vision come back today (he lost it yesterday), but his left hand was able to squeeze Chaney's hand. The doctors are glad for the progress but have to watch this improvement over the next week to make sure it wasnt just a one time feat. Still, Chaney was very excited. She did say it took everything out of him just to squeeze her hand and now he is exhausted, but he too is happy for ANYTHING in the right direction. The nurse was also starting Cory's 8th IVIG while I was talking to Chaney. Just to give you some reference, the doctors were hoping one bag would stop the disease and start the healing process, so getting his 8th bag is kind of a big deal. Thats all I have for now, but I'm sure I will talk to Chaney again before tonight.

Chaney called this morning and had remembered a few more details. A few months back, Cory had a case of MRSA. I know, lucky Cory right! Anyway he happened to mention this to the doctors on Monday night. When he woke up Tuesday morning, everyone, I mean Doctors, Nurses, and Visitors, were wearing these yellow gowns and gloves. This disoriented him and gave him quite a bit of anxiety, attributing to the especially bad mood that day. They are taking nose swabs daily and yes, he is still testing positive for MRSA. This does not effect him so much right now, the staff just has to take extra care as they travel from patient to patient.

Chaney has been at the hospital all day and not much has changed, except he can sleep at night cause they leave him sedated then. He was happy to hear about the blog and said his tounge was dry. I guess they have these pink swab things Chaney likes to call lollipops to add moisture to his mouth for that, but since he cant swallow, the moisture just pools at the back of his throat. He also recieved another IVIG.

Just a side note, the one part of his body that is working accutely well is his brain. He is taking it all in. The nurses keep saying he wont remember any of this. Normal Cory would agree, however, as one of the nurses told Chaney to not stress over trying to understand him right now cause he wouldnt remember anyway, Cory got pretty upset. People keep talking to him like he is a child or incoherrent. That is NOT his problem, so his frustration ever grows on that front. He really does appreciate all of the support he is getting. So many friends and family have gone to see him and have taken shifts to sit at the hospital, and he is aware of everyone. So big love to his support crew and all who are praying for him.

Week 2

SATURDAY May 2: Cory lost his ability to walk and sit up as the disease progressed. More testing was done, and the pain continued to get worse. He could no longer swallow and was put on an all liquid diet. He choked on the liquid as well. He recieved his 2nd IV immunoglobulin treatment. Cory has still not been sleeping much.

SUNDAY: Cory and Chaney's families fasted and his family all gathered in his room to break their fast that evening. He began losing the ability to speak and due to his rapid decline, was moved to the critical care unit. He recieved his 3rd immunoglobulin treatment. Visitors are not allowed to stay in the room at night in the critical care unit and that was hard for Cory as he did not want to be alone. Bill stayed the night in the waiting area but was asked to be with Cory around 5am as he had a hard long night.

MONDAY: Rubi and Scottie got to go see their dad. They sat Cory up as much as possible, put a hat on him, and took the oxygen mask off so Rubi would not be so scared. He was still hooked up to so many things that she could tell he was sick. Rubi was so tender with her daddy. She patted his hand and tickled his toes. Chaney said that it was hard for Cory cause he misses his Hunry so much and he couldnt hold or play with her. He is struggling emotionally with his inability to function and is getting more frustrated by the day. He is still in incredible amounts of pain. After the girls left with grandma & grandpa, the doctors determined that he could no longer eat for himself and it was time for the feeding tube. Chaney said that the first time they tried to put the tube in it kept kinking. Cory couldnt say much but his eyes were wide with pain and his body was involuntarily convulsing as they tried to force the tube down. Chaney had to leave the room for the second attempt and sent Cory's brothers Scott & Ty in. They said that the second attempt was much like the first, and very hard to watch. Luckily on the third try it seemed to go in just fine. Scott, Im sure you can give better details on this as I am hearing it second hand. His 4th and final IV immunoglobulin treatment of this first batch was given. He had a terrible night, and the nurses had to get Bill to sit with Cory at 3am because he was having night terrors.

TUESDAY: Cory continued to be in a lot of pain. He was in a really bad mood and was really frustrated with his struggle to communicate his needs to his family and to the doctors. That evening Chaney took John Richi back to see Cory and didnt return to the waiting room for a very long time. As they went in, the nurse was doing a routine breath test (done every 2 hours around the clock every day) to watch for respitory failure. As she put the clip on his nose, it caused Cory to have a severe internal nose bleed (due to damage done when putting in the feeding tube). Cory tried to tell the nurse that he had a large amount of blood running down his throat, but due to his difficulty speaking and communicating she couldnt see anything wrong and went to leave his room. As she did, something alerted her to a problem and Cory was choking and aspirating on his blood. It was a very scary moment and had the doctors and nurses jumping. They couldnt get the bleeding to stop and had to pack one side of his nose. Bill stayed the night with him.

WEDNSDAY: Around 4pm Cory was put on a ventilator and intubated as he reach respitory failure. He is on controlled sedation so the nurses can wake him up and check on his stats. Chaney said Cory is ticked that they dont just put him under and keep him that way so he can finally get some rest. He wants to wake up when this is all over. He can nod in response to questions but that is not his idea of communication and continues to be frustrated with that. That night Bishop Mecham, Bro. McDonald, Bill, Scott, Ty, Jim, Ben, and John all gave him another blessing. He has had many throughout this process, but this one had the most priesthood at one time;) This was his first night alone. I havent heard how that went yet.

THURSDAY May 7th: Cory was mostly sedated. He got his first bag of the second round of the IV Immunoglobulin treatment (thats a lot to type so I am gonna abbreviate it from now on as IVIG). He is also on antibiotics because he has an infection in his lungs from aspirating. Cory did wake up as Chaney was leaving and tried to communicate with her. They have given him a communication board and Chaney has to hold his finger and he has to try to move it to the letters he needs. At one point Chaney said he just started knocking on the board and she asked him if he was trying to say knock knock. Cory didnt find that very funny. He did manage to ask her to make sure everything is being documented because he has a tendency to forget things. If he forgot this I think we would all be surprised! I think that brings us up to date. I know there are a lot of missing details right now, but as Chaney remembers things I will edit the post and try to update them to keep them as accurate as possible. If anyone has better memory, please leave comments with the details, that would help. Chaney is kind of in a blur right now and is doing her best to balance all of the trama, information, and little girls right now. She has had a tremendouse amount of help from all of the family and couldnt be more greatful.

How it all Started

Today is Thursday May 7, 2009 at 11:00 am. I am sitting in the Critical Care Unit on the 2nd floor in room 23 at the Mayo Clinic Hospital located off of 56th street in Scottsdale, AZ. I am listening to the sounds of the ventilator that is keeping my husband alive, there is a high-pitched sucking sound followed by a sound of air releasing. The sound is in perfect rhythm as Cory’s chest rises and falls. There are other noises of nurses and doctors tending to other patients. The room is dim in light; the curtain is pulled half open along with the sliding glass doors. Cory is resting. He has reached the point of respitory failure and is currently intubated and under controlled sedation.

The reason I was so descriptive in my first paragraph is because that is how Cory would have written it. But, since Cory isn’t writing this I am going to go ahead and write like me from here on out. I am going to try and give as much information as I can about how the last few weeks have evolved, as well as I can remember it. My writing may be boring but I want to try to document the highlights so that Cory will be able to look back a know what he has gone through.

It all started with our entire family getting the flu a few days after Easter. None of us ever got the stomach part of the flu but we had the coughing, runny nose, sore throat, headache, body ache, and fever parts. Cory got it about a week after the girls and me.

On SUNDAY April 26th Cory had had the flu for about a week. That night he fell asleep in front of the TV and when he woke up and walked into our room he noticed his toes were tingling and numb.

MONDAY: He woke up and his toes and heels were still numb and tingling and he was really achy from the flu. Since he had already missed a week of work he wanted to go to the Dr. to see if there was something they could do so he could get back to work. At the Dr. they did a typical exam and said yes you have the flu and there is really nothing we can do for it but, here is some Vicodin for the pain and they ordered some blood tests to make sure nothing else was wrong. They really didn’t address the tingling. He went home and took the vicodin and it made him feel GREAT. So great that I told him he better not get addicted to it. Ha-ha.

TUESDAY: He woke up and felt even worse than Monday so he took another vicodin and it made him sick to his stomach and so he didn’t take anymore. His tingling and numbness now started to be in his fingertips, teeth, left thigh, and entire bottom of his foot.

WEDNESDAY: The numbness and tingling was worsening and so we decided to go back to the dr. and he said the blood test came back normal but maybe this sensation was being caused by stress so he prescribed an anti anxiety med. and a nerve med. and sent us on our way. When we went home he took the meds. And they made him CRAZY LOOPY but he just wanted to sleep it off. By that night Cory was unable to walk normally. He had weakness in his legs and when I asked him if he could crawl like a baby he was unable to coordinate his movement in his arms with his legs.

THURSDAY: He woke me up at 5 am and said that he needed to go to the ER. So my dad drove us to Banner Desert and we were the first people in the waiting room. On our way there we called our home teacher who is a Dr. at the Mayo Clinic Hospital, just to get some insight but he didn’t answer the phone. After waiting 7 hrs. without seeing a doctor, the ER was filled with about 100 people; almost all from what I could tell were there due to the SWINE FLU SCARE!!!! It was so frustrating. So our home teacher called back and he was able to get us into the ER and the Mayo Clinic Hospital. Within two hours of walking in the front door we had seen two Neurologists, had two spinal taps (the first one they couldn’t get any fluid) had a series of blood work, a CT, MRI, and x-rays.

FRIDAY: Cory had the PT stop by and he got to go for a walk with some monster contraption. They did more tests and finally diagnosed him with Guillian-Barre Syndrome. Up until now he has been being monitored, but not treated. They were able to start the first IV Immunoglobuling treatment that evening.

This is where things get a little blurry for me and I am not sure the order of things to tell you but my sister is going to give daily updates from here on out.

All I can say is that Cory has been in a lot of pain and suffering.


Thank you all for your love and support. Cory before he was put under wanted EVERYONE to know how grateful he is. He and our family have felt your thoughts and prayers.

My sister is going to continue updating our daily happenings….


Love Chaney