|Posted on October 20, 2010 at 7:43 PM|
Day 13 and counting here at the hospital. I was told yesterday by several people that I would be able to go home today. My parents brought home my Halloween decorations, cards and magazines last night so I would only have my bag to bring home today.
I was awoken this morning by the doctor on call to only tell me that I would not be going home today and would be staying through at least this weekend. I am disappointed. It is very hard to live my life with such uncertainty every day, but when someone tells me they are going to meet me at a certain time or in this instance be discharged from the hospital is very upsetting. This Friday makes two weeks I have been here. I know it's not that long. I mean back in March I was here for the entire month. Transplants are month long stays. If I added up all my hospitalizations, it would most likely equal a year. But who's counting? I just want to be back with my familiar surroundings, my own bathroom, wear my own clothes and not have to pee in a damn hat!
The reason I am staying through the weekend is that I tested positive for c diff. I got it from being here at the hospital. I caught it here last year during one of my stays as well. You can Google c diff., I suggest going to the medicinenet website for a true, to-the-point description of what it is. Basically, you have good bacteria and bad bacteria in your stomach. Since I am immunosuppressed and have been on many antibiotics, bad bacteria has flourished in my gut and a strong antibiotic to treat it is Flagyl. (NASTY!) If that doesn't work than an even stronger antibiotic, Vancomycin will have to be used. They want me to get better before going home. So, I'm here for the long haul. I miss my Halloween decorations. They were quite cheerful.
I've had my great nurses here on the oncology floor which always help to make me feel more comfortable. However, after the PEG was installed on last Wednesday I had SEVERE pain and even after being given lots of pain medicine, the pain would not go away. My nurse had to call the GI surgeons. I was moaning throughout the halls. (I have never had this much pain and have NEVER said much as boo before.) My nurses knew I was hurting. I was brought down around 3am for X-rays and cat scan of my belly. They thought that the tube may have perforated my stomach or colon or something. Pictures showed the tube was placed correctly, but I had a lot of extra gas built up inside. Very slow recovery. After all, I have a tube sticking out of my belly that hangs almost half way down my thigh. Not the most comfortable thing in the world.
I started my first tube feeding by a pump last Saturday. I was fed over a 24 hour period. It was only 10ml (2 tsps) per hour to start, and then was increased as I was able to tolerate. Over the 24 hours I didn't even get a 1/2 liter in to me. Yesterday made 3 weeks without solid food. I've had a popsicle chopped up here and there, a jello, a pudding. I haven't felt like anything though because it has been so long without food I feel nauseous. The tube feeding went well and was increased by 10ml each time. The pump takes a long time and if I were at home, I would be tied down by the pump. I was taught how to bolus feed yesterday. This is by gravity. I have a huge syringe that holds 60cc. I first flush with around 50cc of water. Then I pour my lovely (yuck) formula of Jevity into the syringe. I unclamp while holding the tube up and it goes into my belly. I take a certain amount and that is my meal. I should be getting around 6 meals a day of this with 3 hours in between. The point of this is to try to heal my esophagus and keep me sustained to stop losing weight. The neat thing about this tube is I can put most of my meds into it! Yeah weird, I know. I just put them in the tube with water and unclamp and there they go. I clamp it back up and done. I do feel full, even though I am only getting a total of 1/2 cup. The more I do it, I think the more easier it will become. I'm glad I am the strong one. I do have to give my Mom props though. She did my feeding last night while here. It is still very sore.
Well, that's the latest and the greatest. If you plan on visiting, please let me know ahead of time. I am still very tired and weak. As always, no germs you or someone you know that has been sick.