Sunday, October 23, 2011

Health update - sorry for the wait :(

Hey I guess you can say that it's been really hard for me to even provide for you a health update! Ugh :/ Things have been so stressful and of course, painful.

Last week I had to be admitted to the hospital for persistent vomiting and retching that wouldn't stop. They gave me so much nausea medication but none of it worked. I had gone to the ER next to my house first and they said nothing was wrong (bloodwork looked normal) but then went to a totally different hospital called Baptist in Miami (really far from where I live) and they almost placed an NG tube to suction my stomach cause I was vomiting so much bile it was ridiculous, my G tube wasn't do anything (now, before you think why haven't you connected it to a decompression bag? well, unfortunately, we don't have those at the hospitals here in FL, they are extremely expensive and I check everywhere for good deals to buy them or try when I get a chance to get people to give me a few of them for free or something and it just doesnt work out so we don't have the ability to get those decompression Farrell bags...), so yeah there's no way to "decompress" my stomach anyway. Anyways, we found out I had pancreatitis, not sure why I got it, but I had it and they connected my G-tube to suction and the vomiting and retching stopped almost completely. It made me get better. A mixture of pancreatitis and my very bad motility issues was just making me really really ill. We saw the hematologist who looked at all my bloodwork (my platelets mostly) and diagnosed me with chronic ITP. ITP = idiopathic thrombocytopenic purpura, which means I don't have enough platelets cause my immune system destroys them. Treatment for it remains pending, if it gets worse, we'll try transfusions, etc. But get this - the week before this pancreatitis decided to come I had to get two surgeries to replace/fix my GJ tube cause it had come out of place. My body doesn't recover well from these replacements and "fixations" of my GJ. So, we left Joe dimaggio after 2 attemps to get my GJ back where it was supposed to be, arrived a good two days later at Baptist with bad acute pancreatitis AND with all the vomiting and retching of course my tube came out of place...AGAIN.

At Baptist they told us we had to get that tube back and I dreaded that whole week of pancreatitis and when I left I felt great, way better than I had felt before (obviously). But they I had to go two days later back to Baptist and they told us that they're pretty sure they would be able to do the tube change with the same tract and stoma but they were gonna change it to a bigger tube not the button and I would be a-okay. However, when I woke up...they told me and my family that it was impossible to work with that tube so they had to make a brand new incision, with a bigger stoma and leave the other hole in my belly to close. So to this second I have three belly buttons.

When you look at the complexity of my situation you begin to wince. Or at least I do.... I've had three surgeries in about two weeks, one of which involved a real incision....I'm in so much pain I can barely explain body feels like it's been hit by a truck...I was sent home hoping that oral pain medications are going to help me get through this but so far it's not working so great...I haven't gone to the bathroom in about a month and in the hospital they tried getting me to go and it didn't work...we have no idea what step we are gonna take next. I have a fever and have had one since getting out of surgery but they say it's normal cause my body just went through surgery. Honestly, I don't know what else to say in this update....but I'm supposed to go to mito camp in a couple days and I'm in this tremendous amount of pain and I don't know what to do about any of it....I'm praying God PLEASE give me a break soon cause I just need one SO much.

Please continue to pray that I can catch a break, that this pain from the new tube goes away soon and I can live life again...and tomorrow is the 5th month since one of my close friends Roxanne went home to's really really hard on me and everyone who knew her...pray for us and her family for them to be comforted she is no longer in pain and no longer suffering....I will see her again one day, I can't wait...

Nothing else I need to say, the words on my tongue have dwindled away...I apologize.......


Wednesday, September 7, 2011

Broviac surgery - plus prayer requests

Hey guys,

I'd like to say first if you would please pray for my friend, Kelsey, she's not doing well right now and she is going to the PICU. I don't feel like explaining, but she is very sick right now and I would appreciate it so much if you would please pray for her health and for God to heal her 100%.

Another thing, I am going to be getting a new central line, a Broviac double lumen, on Monday. We are still waiting for Dr. Flores to call my local GI about what we're gonna do about my colon. Blegh.

I have this pounding headache and finally I convinced the GI to please let me have dilaudid for my head, not for my stomach cause oxycodone works for as long as I have this pounding headache they will use dilaudid. (1/2 mg)

Thanks guys, hopefully everything goes well with my health soon. And oh, yeah, I also found a homescooling curriculum that I love!! I'm really excited to start it cause they have an online chat community to talk to other kids that are doing the curriculum too. It's called Oak Meadow. I also get to do a professional, basically "shadowing" of the job that I want to pursue. I want to pursue respiratory therapy. I know I can handle it, it's exciting because the RT that i have here said that it was cool, but I have to get special permission, first. Hopefully they will let me wear my own scrubs! LOL. I've been scrub shopping online since last night and I've found some really cute scrubs. I might even go to Uniform City to look at all the pretty scrubs :) Can't wait to one day wear them, lol. :p

Please do keep praying for me. This infection is clearing up a bit which is good. I think the UTI went away too...they changed my antibiotic from vancomycin to ancef. The anesthesiologist wants to try me on IV methadone to see if we can tackle my stomach and pounding headache at the same time. She doesn't like oxycodone though I really get relief from it with pain.

Thank you guys<3

Sunday, September 4, 2011

Central line infection + stuffs

Hey guys....

So, I started getting sick Friday night with a really bad pounding headache and just didn't feel well. I thought I had a fever, but turns out I have never had a fever, but I went to the ER early Saturday morning around 6 am I got up cause I felt really bad. I got there about 6:30 and asked the doctor to draw blood cultures, so they did...I got dilaudid and some IV fluids and was feeling a heck of a lot better since the night I didn't sleep so well with that headache...then I got dilaudid every 4 hours which was really helping but it was not lasting very long, which sucked.

Got transferred to the children's hospital to be admitted for a variety of reasons...colon impaction, this headache that wouldn't go away, really really bad nausea, and a UTI. Then this morning the doctor came in and told me that my cultures came back positive; they grew out Gram positive cocci bacteria. So, i've been started on vancomycin and already got my second dose, haven't gotten horrible side effects but it's still early so I don't know what will happen later....I've also been started on Golytely to try to clean me out, then talk tuesday with the doctors in Boston and my local doctors about what we're gonna do about my colon because I obviously have not responded to the amitiza. :/

Other than that, i'm admitted and not feeling bright or bubbly as I wish to be...I feel really sick to my stomach but already received my 8 mg of zofran, but it hasn't helped. My pain is under control mostly, I already got the oxycodone and it works pretty well for me. It's just the really bad nausea and maybe I should vent my g-tube cause of it...probably going to right now..

Wanted to wish a very happy birthday to one of my very closest friends, and mi amor, Diego! Happy birthday, babe! <3 You make me so happy! :)

AND....If any of you are local, your welcome to come visit...however, if you're sick, please don't. if you want to know what hospital and room number, just ask me. Thanks, and keep praying, I really need it right now. <3


Monday, August 29, 2011

I am not feeling well at all...

Today has been a very vivacious day.

After a scare last night with a seizure-like episode at night time (we still don't know what it was) I saw my neurologist today and he wants to schedule a longer EEG cause I've been getting too many seizure-like episodes or seizures. Neurological crap that we are confused about...

I had an EEG done about 2 1/2 months ago, and it showed that my brain is constantly in pre-seizure mode. It is irritable (the reason why seizures happen) in a few instances. I'm getting these constant body spasms during the day and a lot at nighttime that doesn't allow me to sleep. My neurologist wants to get another EEG done, but longer cause he's convinced my brain activity has obviously changed since my last symptoms are getting worse and it's just another problem that we've been dealing with for a while that is going to bombard us just like my stupid stomach problems have been. Maybe not, i'm going to rebuke this disease from robbing me of my life any longer. I am BEYOND sick of this. Too many medical problems, I just want to be done already.

Besides my neurological crap, my stomach has been causing me severe pain. I have barely been going to the bathroom every three or four days with the Amitiza. When I go, I have to use multiple enemas and I'm just not going anywhere with the bathroom thing that is significant. It hurts too bad, and that's not an improvement to me even if I'm going a tad bit more often. I threw up this morning twice and I hadn't even eaten or drank anything, it was pure acid and junk. I'm not sure if I could even handle this stomach stuff anymore. It's 2 am and I still haven't gone to sleep cause my stomach has been bothering me regardless of the medication I've forced down the tube....

And other than medical stuff, I went to IKEA with my mom to look for  a new closet unit for me cause mine is not good nor practical for my needs right now. I need a lot of room fore more medical crap, like my feeding pump bags, miscellaneous supplies, and nebulizer stuff so we need to get me a closet that can be practical and easy to get to as well as hold all my medical items and personal items. After looking through IKEA I went to my best friend Diego's house for a while. Okay, maybe a little more than just a friend as we all know, I mean, I'm there so often it's hard not to think of it that way! :p Anyways, Diego's such a sweetheart. He's really there for me all the time when I need him (except for the wee hours of the morning, haha) and he's a wonderful shoulder to cry on. And cuddly too! :p <3 Love you, Diego!!

I'm trying really hard tonight to not go to the ER. If I go, I will probably let you all know through my Caringbridge. My Caringbridge is and you can obtain my password by sending me a personal message on facebook if you don't have it.

Love to all. And lots of hugs. <3

Thursday, August 25, 2011

Many things going in my mind..and BENEFIT CONCERTS!!

Hey everybody...

So besides everything not being so rainbows and butterflies today...just some personal stuff and my health being suckish as usual, it's been...blah. I haven't been feeling so great today. My stomach has been driving me nuts. So I'm gonna take some medicine cause I'm exhausted and in pain and yeah, all that jazz.

Anyways, the main reason for this post is because there is a fundraiser concert series for me to raise money to buy a new power wheelchair!! It's going to be at an indoor quaint little concert venue called The Talent Farm in my hometown and starts September 2nd! It's gonna be an awesome first night of great music and for the rest of the month during available dates, they're gonna push Caroline's Concerts in the holes! I'm SO excited!! They're supposed to get a lot of volunteer bands come for multiple concert dates so people come and watch and all the ticket money is going to be donated to Caroline's Concerts! Ahh! As well, I'm going to be performing during a couple of these awesome concerts. (insert extremely happy face in this little space that is too small to fit all my happiness here!!!! :D)

Here's the link to click that will bring you to the Facebook event about Caroline's concerts. I suggest you go raid the page and if you live in my area, RSVP and come join us starting next Friday at TTF for a great cause. :) If you don't, still check it out! I am really looking forward to these concerts.

I'm really, really, REALLY trying my hardest to stay out of the hospital but it doesn't look like this is going to last much longer...I haven't gone to the bathroom in a reaaally long time and have been taking pain medicine cause the pain is so horrible in my tummy. It's just covering it up, I HATE it. Besides, it's medicine and it goes through my tube...two very obnoxious and mean combinations. :/ Oh! And I also started for the first time today my Co-Q10 supplement as part of my mito cocktail!! (mixture of vitamins supposed to help with the build of the mitochondria and energy). Dr. Korson told me that I need to be on more TPN cause I'm not getting enough with the volume i'm on based on my bloodwork. Also told me I need a new line and need to pull this PICC cause PICCs are not meant to be long-long term, and this is gonna be long-long term (which REALLY sucks!! things better shape up soon - or I'm gonna seriously punch somebody! referring to my organs, by the way.)

Thank you thank you thank you for continuing to pray for me and for all this love and support! It's so amazing! :D If you would please pray especially tonight, though, for three people that are on my mind....
1) Kelsey - my friend Kelsey needs prayer cause she's sick in the hospital, she's there a LOT and from what I know she's gotten infections in her central line and that's really bad :( Please pray that she gets healed and gets stable to go back home where she belongs!!

2) Brittany - my friend Brittany is so dear to me, she is one of the sweetest girls I've ever met...she has also been in the hospital for almost two months. They just found out that her fairly new, seemingly clean PICC line is now possibly growing something. She's had too many central lines :( Please pray that she can get healed from any infection or any malnourishment in her body that is causing her to have to stay in the hospital longer or something dramatically great will happen soon to her body to speed up recovery and go home super soon!!

3) David (Kels' friend) - From what I know, I don't know David but he is one of Kelsey's dear friends back in her previous hometown. He has cystic fibrosis, had a double lung transplant and is in the ICU right now, been really sick for a very long time. They are starting to ask the family to start asking for his wishes because his chance of survival is very very slim. It's really sad, please pray that this family could receive comfort that the right decision be made or God puts His healing hand on David so he can jump out of that hospital bed and prove that miracles exist. 

Thank you guys so very much for reading. You're so great :) Remember that. Give yourself a hug for me :) hehehe. Love you all!

Wednesday, August 24, 2011

Saying goodbye is so not easy.

Today, I learned that on August 19th, another DTP sister, Jules McLaren, passed away.

It was hard to hear, as all deaths are...but it is awareness week for heaven's sake. I guess this is another sign that this disease is lacking awareness incredibly even more...but when are the doctors going to listen?? When are they going to realize the seriousness of these diseases?? People drop like flies from this disease and it's complications yet it is clear that the people who are supposed to take this the most seriously are not visible...they seem to be hiding and ignoring this awful beginning plight..dear Lord I don't know if I could take another DTP sister leaving this Earth too soon...we all want to see Jesus but I wish that we could all see Jesus through other means and not from sickness to our, old age or something.

I'm sorry. I'm just venting, I guess...I suppose my heart is still sensitive from May, when I learned of the death of my friend Roxanne. Forgive me, our friend Roxanne...all my DTP family. She was such a sweetheart, never thought of herself before anyone else. Always looking to help, in any way possible. Although I did not talk to Jules very much I just know that she struggled with her health, as we all do. God forbid, if we lose another one, I'm not quite sure how I'd be able to handle it...

Jules McLaren, although we did not talk much, you are currently the sunshine to my life. If you were a solemn believer in God and accepted Jesus as your savior, then I am certain you are dancing around in your new body, free of the disease from hell and eating and drinking more than you have in a long well as being happier than you've ever been in your life. I really hope you're there. I really, really, really hope so. You deserve it. You were so sweet when we talked, you seemed like you were a good friend. If you're eating chocolate cake up there, eat a piece for me...probably the fluffiest, most delicious cake not on Earth!! Oh, and you so deserve it (again). I kind of wish I could have been able to say goodbye...but it is what it is.

Please guys. Please. That's all I'm asking you....count your blessings. So many people die of gastroparesis and intestinal pseudo-obstruction. DTP is NOT a friendly disease. It is always out to get you. Every day, I have to constantly stare at this central line lodged in my chest that I desperately need for TPN. It could catch infection no matter how much I baby it. I'm blessed nothing has happened to me with this line, but it's always a risk. These diseases don't come with off buttons or chillax buttons. No, they're always there and they always rob you of stupid things you take for granted. I just want more awareness is all. I want people to know this exists, mostly doctors because they're the ones supposed to be taking care of us and these life threatening complications occur a lot just from lack of knowledge in our physicians!!

I think it's safe to say that although hate is a strong word, it's just not strong enough to describe how I feel about gastroparesis and pseudo-obstruction...AKA the diseases from H E L L. Rest in peace, dear Jules. Love you.

Saturday, August 20, 2011

A lot to digest.......

Things have been long and hard...I have traveled safely home, but I have not been able to call myself "stable", but I wish that I could.

I came home I think a week or a little less than a week ago...I'm don't remember exactly what day I came. Boston was very productive, definitely a God-sent trip...everything worked out perfectly, and I even got to stop by and see two of my friends, both named Taylor. :)

Ultimately, we got what we went there for...answers. I did the manometry testing. We found out my stomach is still dead, and my colon is dead. My small intestine is still good, which is great. We also found out that I definitely have a diagnosis of mitochondrial disease after seeing the mito specialist for six hours. It was wonderful, really. He even identified this severe pain that I was having after replacing my GJ tube that has stumped so many doctors as "very common in mito patients". It made me feel better...not so alone. He also put together my family history and found out my mother has it too. She has a lot of the same symptoms that I do...and my brother quite possibly could have a form of mito, too, based on his thriving, or should I say, failure to thrive as a baby and his health struggles to this day, too. :/ I don't want my family to have this awful disease...but it really does give us a bright light on what's going on. It's not just my immediate family...this stuff traces back to my mom's mom and all my family's health problems...AND dad, his severe digestive issues and chronic ulcers when he was alive and his sister that is in a wheelchair, too, like me cause of muscle problems and weakness that was never able to be identified along with digestive issues... it all makes sense, even though I wish that we didn't have to have this.

We're gonna start me on one medicine called Amitiza for my colon, see if anything miraculous happens...if it doesn't work, we're gonna have my colon removed... :/ I have mixed feelings about this. I don't want to have it removed, but it's literally doing's just sitting there and not doing any work at all whatsoever. Oh yeah, well it's causing me pain and misery and causing me to get impacted. I haven't gone to the bathroom in about two weeks. Sigh...I don't know when we will try Amitiza, but I haven't heard any good reviews on it. I've heard it's got nasty side effects like headaches and diarrhea and cramping...I HATE that. I don't want to go back to diarrhea symptoms, oh man, that was horrid..I'm not saying it will happen to me, but just to have a chance of having those symptoms again makes my stomach go into a knot..also going to have me started on either an upped dose on my muscle medicine Neurontin or new medicine to help me based on findings on an EEG that I'd rather not talk about at this time, but my brain is basically 24/7 in a state of pre-seizure waves with other findings. Just a lot to digest for me, or not digest in my case... haha, sick humor. :P Oh, and I also gained a few pounds, even if I know it's because I haven't gone to the bathroom in two weeks..ahh, I don't care! I like feeling something on my body.

Anyways, we're also looking into getting a wheelchair van cause based on recommendations by my mito specialist and some buddies we've decided it's going to be best if we get me a power chair instead of a manual's going to help me preserve energy a lot better than a manual wheelchair. Hopefully we can get me started on a light physical therapy program as well... everything should fall in place soon. TPN has also been decided it's going to be a long term thing as much as I don't want to, it's what's keeping me alive right now and kinda sorta out of the hospital...

And through this all, it makes me happy knowing that I have people who support me and people who are willing to lend a shoulder to cry on. Oh, and before I go, I wanted to let you all know that this week is awareness week for the diseases that have taken away my ability to eat without vomiting or getting super sick, and severe pain with trying to go to the bathroom: Gastroparesis and pseudo-obstruction. Even hearing their name makes me smoke a little. Ugh. Anyways, I wanted to spread awareness cause not many people know that these things makes me upset cause even though it is SO horrible and the symptoms cause serious things like eating through feeding tubes and central lines though doctors don't even know about it!! For awareness week there are awareness pictures that I'm going to reproduce so everyone is nice and aware about this disease and it's woes that come with having it. Note to GP and CIP: I HATE YOU!!

Thanks guys, hoping everything is well for everyone, and hoping that this fall brings forth better days for all of you, whatever the circumstances you are fighting in your life....lots of love and hugs.