Hey everyone- I am back. It has been a difficult few weeks. I have been sleeping a lot (ya right, difficult you say), but I get tired so easily it is frustrating. Especially in the morning, it is difficult for me to get up and going.
I feel like I am confined to my hospital bed, in my room. I can't help even less than before. I finally yesterday walked down the stairs holding onto my dad's arm and doug monitoring so I didn't fall. I barely made it back up the stairs later, that was a feit. I did get out to enjoy the sun and warm a little while, which was great.
I have my nephrostomy tubes (for urine) on either side of my body, the dressings for that on my back with my epidural on my back as well. I have the g tube hanging from my front left side which I have to hook up to a suction machine when I feel full or like i am about to throw up. Then there are the ostomies, the colostomy which only requires a small dressing but I have had some problems with it lately. Then my active ileostomy which requires the full ostomy dressing. After my last hospital admission, I had so much swelling in my legs from my feet to my pelvis. It now only remains in the pelvis area which we are unsure if that is tumor or not.
I feel like I am losing my relationship with my daughter, I can't help her. She does come sit with me in my bed to watch a cartoon, read a book or occasionally I will get on the floor to do a puzzle or play candyland. I still get to see her as she is growing so independent, beautiful and smart. I still get a morning hug and kiss and an evening kiss but my time with her has gotten much more limited and that makes me so sad. I am trying to get things done for her, a journal, video, something for her to remember me by, it is difficult though.
I am starting to get better, to the point where I may be able to have more visitors. I know that I have had a few people who have called but it hasn't been the right time yet. I am just getting strong enough now to have visitors more. It's just hard to know when, I never know when I am going to feel good or not. I fly by the seat of my pants these days! I hope all of you out there haven't given up on me. I need to go read all my comments. My computer hasn't worked the last couple of days when I finally felt well enough to get back on.
So this is a glimpse into my life right now. It has been very mentally difficult to go through, many emotions not only with me. Thank you all for your continuous support you give my family. I believe it is getting closer to the end of this journey and we are going into it blindly, trying not to fear but to give up our control and take it day by day.
Take car everyone. Thank you all who have helped us with Ella, meals, etc. My parents have especially gone out of their way to drop everything and help us almost every spare moment they have. love you all. Shawndra