My surgery

Well here it is, the whole story. I went to get surgery on Thursday January 15th, 2009 to create my temporary ileostomy bag, to prepare for my sphincteroplasty surgery to repair the muscle cut during my fistuluctomy in 2008. A couple months after my sphincteroplasty, I will have surgery to reverse or resection surgery for my ileostomy. Anyways, I had to arrive at UTMB here in Galveston at 5:30 am, and all my pre-op and surgery went well. However, after my surgery they did not give me my needed cortisone steroids. At first Mom and I didn't think much of it, but as the night progressed and they continued to give me morphine for my pain, I developed the worse migraine ive ever had. Mom and I asked for some tylenol for the migraine, but everytime we asked they said theyd check to see if it was on my med's list or whatever. Anyways, all Thursday night and Friday morning I seemed to get progressivley wOrse, and still no one would give me anything but morphine. Friday morning after they gave me my usual morning medications I threw them up and then developed a low grade fever that went from 99.2 to 101 in about 15 minutes. After that, Mom told the nurse that I needed some solu-cortef IMMEDIATELY!!! After that the nurse and some of my surgeons staff left to talk about what to do. In the meantime the respiratory nurse came in and pointed out my fast heart beat, and got me some oxygen to help. My ostomy care nurse also came in around this same time to show us how to change and take care of my stoma and bags. I was nauseated, in severe pain from my migraine, and my fever was getting worse. Finally, one of my surgeons med. students did something to make everyone snap out of it and give me my steroids and some tylenol and vicodin. About 10 minutes after i got my steriods,oxygen,and vicodin i was 100% better. My color came back, my fever broke, and my migraine went away. After that they started taking better care of me and made sure i had all the steroids i needed. So, once again my Mom saved the day, and I'm alive to see another day. Mom and I are really nervous now about UTMB and how they handle patients, but they and my surgeon are in for an earful of complaints from us. I'm all better now though, i got home on Sunday, and continue to improve every day. Thank you God!!!

GOOD NEWS!!!

Well, I have great news everyone. I had my colonoscopy follow up appt. on Tuesday and I all my biopsies came back negative for any IBD. Thank God. So, on Jan. 14th I have my first surgery to make my temp. ileostomy bag. Then another surgery a few weeks later to fix my sphincter muscle, then another a few more weeks later to resect the ileostomy. Thank you God for this whole ileostomy thing being only temporary. Other than that, not a whole lot new to report. I got my wii the other day, and have been having a blast with it. That's all for now.

12-24-2009

 

Well we made it here to Walburg. We got here around 12:45pm, and the wind was so bad that the power had gone out. It’s back on now thank goodness because Mom, William, and William’s friend, are going over to a funeral home later to make arrangements for Pa’s funeral. The VA will prepare, dress, and bury him, but will not pay for any service.  So we decided to use the money in Pa’s savings account to pay for a decent funeral service.  So anyways, I guess this is my first blog entry in my first blog series all about my crazy life.

My Crazy Life Intro

Let me start of by introducing myself. My name is Emily Rose Gray; I was born in Boulder, CO on May 26, 1982.  I now live in beautiful Galveston, TX with my mom, dog (Daisy), and my cat (Auguistina). We have done a lot of moving around since I was born, but Mom and I had to move to Galveston in 2007 so I could get the health care I need.  If you haven’t already watched my intro video then you can do that now if you wish. I have Panhypopituitarism, and all that goes along with that but wasn’t diagnosed until I was 17years old.  I have decided to start this blog because just when I thought my life was getting better things turned for the worst.  First my stepfather’s cancer became terminal in November of this year (2009), and he was put into hospice that month.  My Mom drove 4 hours away to Walburg to be with him in November, where her vertigo made a turn for the worst, and to have Pa set up in hospice.  Mom returned home to Galveston two weeks later just in time for me to get a cold, then a secondary sinus infection.  After that on December 8^th I had the surgery consult appointment that had been set up in October by my Endocrinologist.  I asked to see a surgeon about the fecal incontince I have been having since my anal fistuluctomy last year.  What I thought was going to be a standard “look and see” appointment, turned into a science experiment.  The surgeon, nurse, and about 4 medical students were hovered around my butt poking and prodding and discussing it.  The surgeon ended up doing a biopsy, ultrasound, and setting me up for a colonoscopy the next week.  After she was finished teaching and poking around, she told me that she could do the surgery, but needed to rule out an IBD (Crohn’s diseases, Ulcerative Colitis) first.  As long as no IBD is present than she can do the surgery and I would need a temporary ilestomy bag.  If however, there is an IBD I would most likely need a permanent ileostomy bag.  After two weeks of waiting, we finally got back the results from my first biopsy, which showed positive for ulcerative colitis in my rectum. We have not gotten back the results from the colonoscopy biopsies yet.  Before all my medical stuff happened we had planned on going to Austin for Christmas, but with all that happened with me, and Mom’s vertigo being so bad and she being unable to get her medicine for it(no health insurance), we decided to just spend Christmas with Grandma and my Uncle Gary.  The evening we got to Grandma’s on December 23^rd, we got a phone call from my step-brother telling us that Pa was not breathing well and was sweating.  We later found out it was pneumonia and he probably wouldn’t make it through the night. He died that night on December 23^rd at 9:09 pm central time.  That takes us to today, where Mom and I are here in Walburg getting funeral arrangements set up for next week.  So as you can see my life is a bit crazy right now, and I think writing this blog will help me get through all of this. Wish me luck and keep on reading.