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.