There's No Place Like Home

Deja Vu! Once again it is Thursday and the family Hughes is settling into their new routine that includes setting up the ND Tube and flipping a coin to see who gets to sleep on Sylvie's floor tonight (me).

Today was a pretty uneventful day at the hospital however I did manage to have a lengthy and private discussion with Dr. Steele after yesterday's situation. As I mentioned I think she already anticipated the one-one-one but I made sure to let the nurse know as well as the resident on call that I wanted to have a private discussion with the doctor prior to rounds. Shortly thereafter, Dr. Steele who is the Associate Director of Oncology & Hematology and Marianne Mariniello who is one of the advance practice nurses that we deal with on a fairly regular basis stopped by. I wasn't used to being referred to as "Mrs. Hughes." I'm not one to mince words-- my 12 years working at Sony Music have unfortunately made me very forthright, if not confrontational. That being said, after I told them that I felt they were unfairly judging my parenting skills in front of an audience the previous day and grossly upsetting me they seemed absolutely shocked. They genuinely did not feel like they did anything out of line but did highlight one instance where I could definitely see their point.

Picture this if you will and hopefully I'll be descriptive enough that it will make sense:
Sylvie thrashing about, trying to hit the doctor, then pinching her and when unsuccessful, biting herself
Me: "Sylvie, it's ok."

Basically, I was trying to reassure Sylvie that everything was going to be okay. After saying about 100 times "No one is going to hurt you, everything's ok," I shortened it this time. Unfortunately, the doctors thought I was giving permission for Sylvie to hurt others or herself.

See what I mean? I can't fault them on that.

Dr. Steele said that fiery, strong willed smart kids are always a bit more difficult (especially as toddlers) and that her twenty-four year old son was like that. Not only had she read "The Spirited Child" like me but she took him to a developmental pediatrician and was ultimately told by his preschool teacher that he was a leader and would grow up to be either president or a gang leader. I let her know that Dr. Rosen and I had talked about the spirited stuff over a dozen times and were considering meeting with a child psychologist.

As it pertains to Sylvie's experience in the hospital, apparently it's taking her longer to adjust to the medical staff and they don't want to be less thorough in examining her just because she's a wild child. The most innocent cuts, bruises and bumps can be catastrophic to a kid with cancer. I blame Sylvie's mania on the Colorform-up-the-nose-incident and traumatic experience we suffered through at Valley Hospital last summer. Most importantly, Marianne said they wouldn't be going through all this developmental crap if Sylvie didn't have a very good prognosis and bright future ahead of her.

I felt a little better until Dr. Steele brought up the potty issue again. One day, Sylvie is going to take it upon herself and be potty trained and I strongly feel there's nothing Michael or I could do beyond the usual stuff that we've been doing for over a year to further speed it up. I took a deep breath and let it go.

Ultimately, we came pretty close to kiss and making up since we all have to play nice in the sandbox. Dr. Steele sort of praised my organic eccentricities and t-shirt logos (and that I practice yoga in the laundry room). She even came back at the end of the day to say bye and that she'd see us Thursday in the outpatient clinic.

Sylvie was definitely ready to go home and insisted on wearing her pink puffy jacket, tie-dye organic cotton socks and black patent leather party shoes all afternoon. She even got her Vincristine chemo while all dolled up. And off we went!

When we arrived home, I was overjoyed to find waiting for us a brand new Littman Electronic 3000 stethoscope, a present from my most favorite doctor in the universe! Don't be scared if I check your vitals upon entering my house in the near future. Michael made fun of me as I tried it out on myself first. He had better be nice or I might use it on him in the middle of the night. No longer will my ears rage out in pain when I go to determine if Sylvie's ND tube is in her trachea (BAD!), her stomach (GOOD) or duodenum (GOOD too). Actually, I hadn't heard the word duodenum since Zoology in college but will remember it as a great Scrabble word the next time I play (duo+ denum).

The Karas family girls stopped by with organic cheesecake and Sylvie seemed as excited as she could possibly be to see her BFF [until Samanatha began drawing on her princess drawing table!). Shortly thereafter, we carried Sylvie and her apparatus up to bed where I read "Splat the Cat" and she drifted off to sleep to the sound of the ND tube purring in the background. Sylvie's homecoming is a the perfect birthday present.