Hi everyone!!! I know, I know, big shocker, but this is actually Kayla updating her own blog! Sorry it's become such a rarity to heaqr from me personally, but they've been switching meds around and screwing with my sleep schedule. Hopefully soon I will regulate soon, and be a human again, and not some kind of nocturnal creature of the night! Well, surgery has been decided for tomorrow sometime, so start praying now!!! Not that any one of you has ever stopped, what am I thinking?!??! We just want for it to go smoothly, that they won't have to do anything more than a laproscopic incision, that it will heal properly and they won't have to go the alternative route (sewing my intestine to my stomach wall, and I'd have to poop out of a bag for a small amount of time........EEEEWWWW!!!). That the weekend will be quiet and I can recover peacefully, and start building up my diet, slowly. Unfortuantely, I will most likely not be up to blogging, but of course Mom or Dad will advocate for me, as always. Gonna go now, but I love you all, and I know yoiu all love me!!! Peace, God Bless!!!! Kayla.............out.

Who is in Charge?

Well, still no definite answers yet. Rheumatology, GI, Pain Management & Surgery are debating Kayla's fate. Surgery Will not do exploratory surgery on Kayla. She is to high of a risk.
She will be getting more tests run next week. Will update again, when that happens
Take Care
Jeneice & Rick

More Questions Than Answers

Hi Everyone.

It has been a while since I've updated, but I am sure you can imagine what a stressful time this has been. Kayla has been on clear liquids for almost three weeks. Throw in a few mg of steroids plus the steroid pulses you have a hunger like no other. One can only eat so much Jello. Kayla has been having an incredible amount of pain. She has been an 8 on 1-10 scale. I have been on my own until last Thursday when Rick came down from work. She has been having a few tests.
Kayla was given a test capsule to imitate a test called ERCP. A capsule with a camera that should come out and give the DR's a good view of Kayla's intestines. The test runs failed. Both the capsules dissolved before they came out. So then it was on to another test called an MRCP ( a very fancy MRI with fancy contrast Kayla had to drink. During the test something was sending a very bright flash image back. Test could not be completed. It seems the latest dissolving capsule had some sort of metal in it. Which just so happens, is still in Kayla's intestines. How or why there is metal in dissolving capsule & why or how it would get stuck? That is a question that has not been answered. The doctors feel the pain medications are slowing down her stomach. Which is fairly reasonable. One problem, Kayla's pain. The latest recommendation for getting of Opioid is an Anesthetic medication that can give a person feelings of being detached, hallucinations and make one of her eyes bounce. The best part is this medication is only administrated by highly trained staff. We would have to move to the Hemonc floor. I am refusing to move. I feel if they were able to give Kayla chemo on the medical floor, they can improvise again.
They are considering exploratory surgery to figure out her stomach issues. Highly risky for more than one reason. She is on 4 immunosuppressents and the area in questions is full of poop and bacteria. Not high on our list.
I will update when I have a real answer. Probably next week. You can text us or email if anyone has questions.
Take Care
Jeneice

The Questions?

Hi Everyone.
Kayla is out of service for a little while. We are still trying to figure out her stomach problems.
Today is day 6 of 9 - 12 liters a day of "Go Lytely". {The name does not fit!!}
Dr Emery has once again consulted with the GI Docs, tomorrow the will do another test capsule. This will hopefully tell us where & what is hanging up. I will update once we have definite answers.
The transplant is still on hold. The Transplant Doctors will not meet with us until this stomach issue is completely resolved.
We hope Rick will be here Thursday.
Andy & Laura came last weekend. We had a great visit. Thank you to the two of them for making the trek from Montana. The weather in the passes was not the greatest.
Take Care
God Bless
Jeneice & Kayla

Ha! I know you are all wondering, what the heck does that post say?! Well, I'm right there with you. I have no clue who these people are, or even what language the are speaking in. But this isn't the first time I've gotten a foreign email on here. Weird, kinda. Whatever. Moving right along.............I haven't been sleeping well AT ALL the past few weeks, so they decided to put me on what's called Ambien, I'm sure most of you know what that is. Night before last, Sunday night, to be exact, was the first time I took it (but I have taken it before, just not recently). That night I had the most horrific nightmare. Some people think this is a ridiculous fear, but I have always had a thing about......................clowns. There are clowns here at the hospital, but they don't freak me out. See, they're not your usual clown. No red nose, rainbow striped jumpsuit, bushy red hair, over sized red shoes, etc. They are more like eclectically dressed comedians. I am just afraid of the classic clown. On with the story.....So I had just taken the ambien, and I was getting really groggy, so I knew it was starting to work. One minute I'm sitting there in bed channel surfing to find something good to fall asleep to (I have this weird thing, background noise helps me sleep. TV, radio, that kind of thing). Next thing I knew, I shoot bolt upright, sobbing and soaked in fear sweat. My dream was about this mass murderer that dressed up as a clown when they were killing the victims. I dreamt that they went around killing anything that was important to me: friends, family, even my pets!! I had to sit through this terrifying ordeal as they one by one brutally killed everyone. Then right before I woke up, it had finished off everyone else, and was headed straight for me!! Then, naturally, I wake up right before. Well, we weren't sure why I had such a bad dream. Our only theory could be the Ambien, but last night proved that it may not be. I didn't have any dreams at all last night. Tonight I'll try again, and maybe it was just some fluke, and I will instead dream about puppies and cupcakes and rainbows. Wish me luck! My stomach is still bothering me quite a bit, so we're still on a clear liquids diet. I'm getting sick of being in here when I feel well enough to be out (not that I'm feeling that way right now-stomach cramps-but I have been). I want to see everyone! I want to see my family, my animals, my friends, I miss my life! I just need to work on my patience skills, I guess. Doesn't mean I can't be unhappy about it, though!!! Sorry to end on such a sour note, but I have typed myself into a huge plate of self pity, with a little homesickness and frustration on the side. Now I'm gonna go try and take my mind off the less happy aspects of my life.....thanks for listening!

Howdy there everyone! Okay, this is my first official post of 2008! Since it's a new year, we need to start off with a new beginning, right? Well, that plan pretty much backfired right in my face. I was supposed to get out yesterday, but, as always, there is always some reason for me to need to stay. This time it's the Crohn's. Off the subject a little, but speaking of Crohn's, I don't know where this rumor got started, but I still have the Crohn's. Some little birdie has been feeding false information to a few people. Crohn's isn't like a cold, people. There is no "take some NyQuil, you'll be better in no time". It is a disease, and once you get it, it won't just go away. Remission is always a possibility, but you will always be doing treatments for it, and in my case, battling it constantly. Another thing that these birdies are a tad confused about is everything regarding the transplant. WE DON'T KNOW ANYTHING!!!! We won't know anything until at least the 2nd week of January, so don't ask us any more!! We don't know, and don't y'all think I'd tell you A.S.A.P. if there were changes?? Of COURSE I would!!! Okay, well enough ragging on my anonymous misinformant. With the record set straight, I can sign off knowing that whoever chooses to read this will be on the right thought path. Oh, and life sucks right now, since I am now NPO AGAIN!!!! That is a result of the cramps I've been getting the past few days. Just keep praying that things will subside smoothly, and that I will be let out of this prison. I may get in trouble for saying this, but we were going to come down to Nevada and visit before the transplant, since I wouldn't be up to it for a long while afterwards. As some of you may know, my grandma Nonie (Dad's mom) and her hubbie Ralph are watching Gracie for us. She flew down with Nonie when her, Mom, Dad, and I first flew down here in early November. We were gonna drive out to Smith Valley, but Nonie is super super sick, and I obviously can't be around super super sick people, especially now. So therefore, if she doesn't miraculously heal within the next few days, we may not be able to come down. That really really really really REALLY bums me out! I miss Gracie sooooo much! The other day, Christmas I believe, I was on the phone with them, and, being the quirky person I am, I proceeded ton talk to her like I usually do. You know, all dog owners talk in that little baby voice, and they have their special nicknames, etc. So I was talking to Poopsie (that would be the nickname I christened her with), and she went NUTS. As soon as she heard my voice, she started looking around, barking, running around the house, trying to find out where Kayla was, and why she only heard my voice. It was so precious, and heartbreaking at the same time. It was super tough when we found out we may not be able to see her, since we were already looking forward to a visit down there. Of course, we couldn't go to Nevada without going to Grandpa's house. I miss my horse soooo much, I swear I am going through horsie withdrawals. Why couldn't we just skip the sick people, I'm sure you all are asking. Well, the sickness doesn't stop with Nonie. How ironic is it that as soon as I am healthy enough to actually spend some time doing things I want, when we learn I may not be able to go to Grandpa's either! The ironic part being the fact that they, they being Brandon and Trish, have.........omg............get a load of this.......................wait for it.......................wait for it...............S-H-I-N-G-L-E-S!!!!! How un-be-LIEVABLE is THAT??!?!!?!?! Bogus bogus bogus bogus BOGUS!!!!!!!!!!! I am so mad at the world right now, I could scream. I know it will get better in time, but I am sick of time. I want to be better NOW!!!!!!!!!!!! Really, I can't be blamed for feeling like that. Every sick person in the world is entitled to a few of those days, and mine has been long overdue for a while now. It is nice to have somewhere I can go and get peoples advice, and support, and the whole nine yards. I love you guys, you're the best!!! Hugs and kisses to all, and hopefully Next time I write, I will be on my own laptop on my own bed in my own room at the Ron Don House!!! Oh, and silly me, I almost forgot..................HAPPY NEW YEAR!!!!! WELCOME 2008, you'd better be a good year!!!!