Today is Sunday, my mom came up and stayed with Ty all day so I could go home and see the kids. She also had all the girls stay with her the past two nights. Wendy has been with the kids during the day.
Tyler had one more surgery to remove the leftover catheter tubing for the pump. He did well, but they used tape on his face (and this after the tech had assured me he'd relay the info about his tape allergy to the anesthesiologist) and he had an allergic reaction. His face swelled right up, it was awful. We have him on 20 mg of baclofen four times a day. His arms and legs are very tight.
On Saturday they came in and said he has a desmoid tumor. It is benign, but because it is so large (10 cm x 10 cm x 12 cm) it is putting pressure on his organs. We will be discussing possible treatment options tomorrow. Sometimes they remove it, but the odds of recurrence are really high (70%) if they don't get all of it.
They can also do radiation or chemotherapy. I'm not sure about chemo. His tumor is quite embedded in the muscle, so I'm not sure if removal is even an option. His stomach measures 58.5 cm (23 inches) around.
This surgery was the first time I realized how uncertain life is and how quickly things can change. I decided to make a list of people I would want contacted if anything should happen to him. It is best to do that sort of thing when there is no danger of it happening soon. I think that a crisis is the worst time to have to plan anything. Now that I've made a list, I'll tuck it away in the Fire Box and hope that it won't be necessary for several more years.
My overall impression is that everything is going to be fine and that this is just a small bump in the road. He has so much to do here - he can't go anywhere just yet.
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