You Know What They Say… 3 Times a Charm…haha NOT!!

Well, the test results came back and they weren't good. I also started running fevers since Friday night. I got directly admitted to Vanderbuilt on Saturday. This is my third time admitted in the last two months. This is cray cray! Seriously, they did not hit me hard enough with antibiotics the first time or the second time I was here, so maybe this time they will. They better! You know what they say.. three times a charm. 

This is not a game and I feel like they are playing around. I really hate to say this, but this is my least favorite hospital I've ever been to in my entire life and I've been to a lot. They have absolutely no idea what they are doing. I swear, some people should just not become doctors. And sometimes I wonder how they even became a doctor in the first place. They have no experience with e.b., at all, whatsoever. 
I wish I was in Minnesota. Sooooo bad.

Anyway, enough with that. Prayers are greatly appreciated! There is power in prayer.

xoxo,
Sam


And because i love this song and them...

Happy Birthday Jesus!!

Its so amazing that once a year we get to celebrate the birth of our savior, Jesus Christ. He is the reason we have Christmas. To celebrate His birth and sometimes we forget that in the midst of all that comes along with Christmas such as giving and receiving gifts, putting up and decorating a Christmas tree, and hanging lights. But the best part is getting to spend time with family and friends. It has to be my favorite holiday.
I had a great Christmas. I wouldn't have wanted to spend Christmas Eve day any other way. I had the best day. I got to spend it with one of my good friends and his family. I even got to ride a motorcycle for the first time. Finally can check that off my bucket list! lol. It was soooo much fun! Then we went to church for Christmas service and it was great. It was awesome to learn that most of our Christmas songs come from scripture in the Bible. 

And Christmas was good we spent the morning with my dad and then the afternoon at my moms. I am so thankful to be able to spend Christmas at home!!!

And as far as an update, I still have the picc line in but they took me off the IV antibiotics today. They did some more tests today because my skin is not improving. Now just waiting for the results and what they come up with next. I really hate to say it but I feel like the doctors here have no idea what they are doing. They really don't know me or what the hell to do. I really need to get back to the U of Minnesota because I feel like they would be able to help me better up there. They are doing some different studies now and they also have more of my sisters cells stored up there and I think I need another infusion of them or something. Something.. I need something. 

Well thats all. Merry (late) Christmas!

Love, 
Sam

"I'm Coming Home, I'm Coming Home. Tell the World I'm Coming Home"

Heyyy guys!!! So guess what?? I am going home tomorrow!!!!! It's about time. lol. I'm so excited to be going home before Christmas!!

On the downside, they are sending me home on continuous IV antibiotics which means I will have to be hooked up all day and all night. :/ I will be on them until my follow up doc. appt. on Decemeber 26th and then I will find out more that day. 

But hopefully they will agree to letting me be unhooked for a couple hours to get out of the house, maybe, just maybe?? I still need to go Christmas shopping! 

Oh and last Sunday was pretty fun! Two of my friends spent the night with me at the hospital. Oh gosh… its was a blast and was super hilarious. lol. That night involved several prank calls, lots of laughing, talking, and no sleeping :)

Well that's it! Oh and I thought the song below was kind of appropriate. haha.

Love,

Sam

Everything Happens for a Reason

Hey guys!! 
Well, I am in the hospital again. By again I mean I was here 3 weeks ago for the same issue. I have a skin infection that grew MSSA. They put me on an oral antibiotic for two months prior to 3 weeks ago. It did not clear up the infection and I was running fevers so they decided to put me on the IV version of it for a week in the hospital. I wasn't running any more fevers and things started looking better so I got sent home and put back on the same oral antibiotic for ten days. After about a week later I started running higher fevers and my skin started looking bad again. [while still on oral antibiotic]. So I waited it out to see if I would just get better on my own since it was around Thanksgiving and my doctor was out of town. But I didn't get better or feel better, so Thurs. Dec 5 I had a doctors appt to follow up from the hospital stay. My doctor and I both agreed that we needed to do something different because i should be better by now. Oh and I am allergic to the other oral antibiotic that was the other option besides IV. So we planned for admission on Friday the 6th and got started on a stronger IV antibiotic. They started an IV that night and the next day it went bad. They started another IV on Sat. and it started to hurt and burn really bad when they just flushed with saline so they stopped the IV antibiotic because they figured out it was the antibiotic that was being very harsh on my veins. So they planned to put a picc line in me on Mon. since that was when the IV team would be here. Monday came around and I waited all day for them to come put my line in and they never came. My doctor was super mad because all this time Im not even on the antibiotic I came in for so I'm going to have to be here longer :/ So tuesday came around and the IV pick team lady came in and she was very rude to me. She would not listen to anything I was trying to say. I was trying to explain to her that I have a skin condition and I can't use tape on my skin and that I have my own supplies that she could use secure the picc line with. As I was telling her this she put tape on me purposely! And then she basically said "Well if I can't use tape, then I'm not doing it." And I was like "Ok, whatever. [Your crazy. I've had a million picc lines put in before and I never use tape]." She was even mean to my nurse that day. There was no other IV picc team member on call. So, I got sent down to radiology later that day and the nicest doctor who actually listened to me about the tape put my picc line in. Everything went great and they even x-rayed it at the same time. This is the part where I say 'Everything happens for a reason.' I am so blessed I have Him up there looking out for me because I am so glad that lady didn't put my line in. I didn't trust her at all. I think it would've ended bad. That situation happened for a reason. I am so blessed. 
After that happened I started thinking to my self what is going on in that lady's life that is so horrible that so early in the morning she is just plain rude and mean. All I can do is pray for her. She needs a lot of prayers.
So Tues. night I started back on the stronger IV med and they added another one to it. Ive been on them for 3 1/2 days now and I'm starting to 'feel' a little better but I'm not seeing much improvement in my skin.

Also I have the bestest friends in the world.
On Wed one of my good friend's brought me a Christmas tree for my room! That was awesome! Thank you Jacob, I love it!
And on Thurs. two of my other good friend's came by and hung out and brought me a cute little Christmas cake! Thank you Maddie and Ana, It was sooo good! lol 
And today my friend Savannah came and hung out with me and we had such a fun time!!
Also Jacob came back and we played some poker. We were betting with spoons and forks. haha.
I am so blessed to have you all in my life, you don't even know. And ily. And we need to hang out more often, maybe even outside of the hospital lol

Well, that pretty much sums it up. :)

Love,
Sam

An Informal Introduction

For those of you that don't know me..
My name is Sam. I am eighteen years young and wow time flies! I was born with a rare genetic condition that affects my skin, it's called epidermolysis bullosa or eb for short[it doesn't deserve to be capitalized]. Eb causes my skin to be super sensitive. I constantly blister and have open wounds on certain areas of my body all the time. That being said, my arms and legs are always wrapped in bandages. Everyone with eb is effected differently. Some cases are really mild while others are very severe and even life threatening. I'm kind of in between. Other than that slight detail about me, I'm pretty normal. lol. 
On August 28, 2009, I received a bone marrow-stem cell transplant at the University of Minnesota, with Dr.John Wagner and Dr.Jakub Tolar, in hopes to improve and even cure my skin condition. In case you don't know what that is, I will explain. 
First they give you ten days of high doses of chemo therapy [yes i went bald and everything] to prepare your body for the new, good donor cells you will be receiving and so your body does not reject the stem-cells. Let's just say they take you down to where your barley alive and breathing. [oh and Kelly Clarkson is right, 'What doesn't kill you really does make you stronger.'] Then they infuse these new stem cells into your body intravenously  kind of like a blood transfusion. Then the rest is a waiting game for your cell count to pick back up. For about 60 days post BMT my skin was completely healed, but i couldn't enjoy it because i was puking my brains out from the aftermath of the chemo. After that i started to blister again. No one knows why. I did have some small improvements that lasted though.
For those interested my mom wrote about the whole experience on http://www.caringbridge.org/visit/samanthasheridan
It was an experimental trail and I was patient number 7. [lucky #7!!]. My younger sister was my perfect match donor. The trial still continues today.

Love ya, 
Sam