Sunday, September 20, 2009

From Sweet Princess to Princess of Evil

Taylor sleeping with the aid of Dilaudid after surgery

It has been a crazy week. Taylor seemed to come through her revision of the revision of the revision of the VNS surgery. Are you confused yet? In other words, in 18 months, this is the 3rd VNS surgery she has had. I'm thinking this will be the last one…at least for 5 years. I won't even speculate if she will make it to the 5 years because I'm in denial of what the doctors are saying.

Anyway, after coming home, the pain medicine seemed to do a number on my normally very sweet child. She's had this medicine before since she's had a dozen surgeries so I'm not sure why the issues this time. I mean seriously…my affectionate, loving, sweetie threw lego bricks at me! She then layed on her bed crying and promptly fell asleep for several hours. After calls to the doctor and changes to her pain meds, she seemed a little better…until Friday.

She started coughing and running a temperature. We ended up going into Urgent Care this morning because her coughing made the incisions in her chest hurt worse. Now she has bronchitis. They also did a chest x-ray to make sure the surgery didn't cause a pneumothorax. Fortunately, while her lung is a little "under-inflated" (doctor's words), she didn't need to be admitted for a chest tube.

Why is nothing ever easy with Taylor? Why is a "simple" surgery never a simple surgery? Okay, sorry for being whiney. Taylor is just Taylor and after 20 years, you would think I would just accept the fact that Taylor does her own thing in her own time regardless how stressed it makes her mother.


Alison said...

Hi there, I read your post on Blog Frog but don't post there so wanted to come here and say I am beginning to be where you are. I have an 11 year old son who is developmentally about 4. It gets harder as years go by and expectations change for children of his age. I just wanted to say hi.

Anonymous said...

Just wanted you to know you weren't alone. My mother went through what you are going through for 45 years. My brother was born with severe CP. Totally bed bound. There's the fear you will out live the child, fear the child will out live you every day.
My brother passed away in 2005. I miss him every single day. He was my baby until the day he died, even though at the end he was so big I couldn't carry him any more. At his funeral I had them play, "He's not heavy, he's my brother." I wanted people to know that though the road was long, and sometimes very hard for our family, it was our road and we walked it together and we never regretted one minute of it, even when we got whiny and YES, we got whiny and YES, that is allowed. It's not fair that Taylor has to go though all she has to go through. But she's so beautiful and you are doing an awesome job.
When people would stare at my brother, Mom would ask them, quite boldly, if they had any questions. Often they did, and she would graciously answer them. They would leave with a better understanding of Cerebral Palsy, and a better understanding of what Mom went through. And in a way, she got to vent a little to a perfect stranger about the stresses of her day to day life. That might not work for you and Taylor, but it did work for her. One thing my mom wanted was for people to know who my brother was, for his life to have meaning. His funeral was packed. People came from all over to tell him goodbye. He had touched their lives. I am sure Taylor is doing the same.

Anonymous said...

I am really proud of you and your journal here.

I know it is good for you, but also for others who are dealing with issues like Taylor's.

Good job!