Sunday, July 12, 2009

KNOW YOUR RIGHTS... PART 2

A while back I wrote about "knowing your rights" when you are dealing with medical professionals. My post concentrated on the negative side of what I often see in the hospitals or clinics when dealing with doctors and nurses. Well, this post is about the positive side of things.

Most of you know that my sister, being locked-in (similar to vegetative but with complete awareness) had surgery to remove her gallstones at the end of May. She had become extremely ill with what was diagnosed as gallstone pancreatitis. Surgery for someone in my sisters condition was very risky. Her doctor said she would survive the procedure but not likely to survive the complications following. I asked what the complications would be and he said pneumonia. In my mind pneumonia was curable so I didn't worry about that too much. He may have mentioned other things but it was a stressful time so it's all a blur. All I knew for certain was, if I didn't do the surgery, it would cause her a great amount of chronic pain, which she was already dealing with, and I didn't want her to suffer. After consulting with those closest to me, including the surgeon I wanted to do the job, I decided to go ahead with the surgery.

As was predicted, anything that could go wrong did go wrong.

1. No lapriscopic surgery (5 day recovery, little incisions), she needed to have an open (several weeks recovery, a very large incision)
2. Blood clots found in legs following surgery.
3. Resident physician made a poor decision and gave my sister heparin (blood thinner) immediately following surgery and she began to bleed internally (that one can be saved for the negative medical experience posts).
4. My sister needed a blood transfusion.
5. Following her return home she had a picc line in her arm that became clogged.
6. Developed what appeared to be an infection in her incision.
7. Hospice was called in for what I believed to be her last days of life.
8. She developed pneumonia.
9. Developed blood clots in her lungs.

Where is the positive in all this. The positive part would be the amazing people who helped me through this process.

1. Dr. Toso. Probably the most caring doctor anyone can ever meet. He was our family doctor when we were children and he's been my sisters doctor ever since. He's the guy I call 24/7 (home phone, paiger, clinic #). There aren't many doc's like him. He's always honest, always gives me the good with the bad. Although we differ on some things he is always available and never tells me "he can't" do something. A person could never thank a doctor like that enough.

3. Dr. Rumsey. The kindest, most soft spoken doctor I've ever known. I call him the "dream doctor" because he definitely fits what I think most people want in a doctor. He's the guy that will sit down with you for hours and talk to you about a condition, diagnosis, treatment, etc... and never seems rushed, only focussed on you. He bends over backwards to make sure you are well cared for and happy with your experience.

4. Dr. Hope (Surgeon). Ok, let me ask this, how many people know of a surgeon that will make a house call? I know of one and that is Dr. Hope. When I was too afraid to open my sisters incision site to check for infection he came to her house, opened it up, cleaned it out, instructed us on how to care for it, and left. He's our angel. If he hadn't come, she wouldn't have survived. She would have suffered slowly while her body became septic.

5. The nurses at United Hospital. I can only remember a few names (Jenna, Michelle, Ann). I wish I could remember them all. They worked side by side with my girls, were always willing to help, very attentive. They made sure we had everything we needed for nearly a week long stay. They definitely made the stay a positive experience.

6. Social worker from hospice. The first person that could articulate what I've been trying to say all along. Being the first person to actually understand me! 

Last but not least, and not medical professionals, are the people I call friends. Many people listened to me cry and complain, and wrestle with the rights and wrongs of the decisions I had to make. I vented on facebook, on my blog. Friends read my worries, concerns, and confusion.

Susan: for taking time out of her busy day to come and do energy healings for Kelly.

Cindy: for calling me all the way from Iowa to walk me through the whole "how do you pack a wound" crisis and always being there for whatever comes up along the way.

Sandie: for sending me the "don't mess with texas grandmas" sticker. LOL! It came at the perfect time.

Lori, Sharon, Marilyn, Kathleen, Karie, Fiona, Robin, Heather, Holly (Sandie & Cindy) : Always listening to me rant about something. Always given me your advice, sharing your thoughts, and sending me comforting cards to get me through.

Bloggers & Facebookers: Teresa, Elizabeth, Amber, Denise, Allyson, Laurie, Judi, Erienne, Athena, Amy, Marjean, Anne Marie, Trisha, Carrie and if I forgot anyone that was so kind as to post words of encouragement and support on my blog or facebook, I apologize. Please know that I appreciate EVERYONE!!!

My sister is no longer on hospice. She's been discharged, is doing well. I'm not ready to fly out of the country to visit my in-laws yet but I'm very happy and relieved that she is now stable and doing much much better.