Wednesday, December 16, 2009

elephants and doctors and Bulldogs

How do you eat an elephant?

More on that in a moment.

Today, Rachel and I headed to Mac for a long day of hormone testing - hers, not mine. But the testing was not meant to be. As with previous tests, I reminded the staff that Rachel has next to impossible access for veins. This is an integral part of testing and getting any information from Rachel - from her blood.

After trying unsuccessfully, both bloodwork technicians were frustrated. So was I. Rachel doesn't really react to the pricking and poking initially. Sometimes that means the techs will try for longer than with other children who might scream or cry. Yet, later on, she is tired and bruised - and I am sad for her. This morning, the technicians seemed almost frustrated with me, but I think it was the situation. They told me it is not fair of the doctors to order all these tests if we can't put an IV in Rachel. They told me to tell the doctors Rachel needs a portacath.

Well, that was the conversation we had with a surgeon back in May, and he discouraged the idea (argh!). Yes, no, yes, no.... so many opinions. It's hard to advocate for your child when the professionals have differing philosophies. I also wrestle with how pushy to be. It's my nature to try to form a relationship with the professionals, so they will remember our family and help us. I know if parents are too pushy, they are sometimes ignored. This morning, I was told to wait for some phonecalls for rescheduling, and after two hours of waiting, Rachel and I left for home.

So, this business of advocating for our kids is huge. Kind of like eating an elephant. How do you eat an elephant? One bite at a time. Today, I felt like biting a doctor.

I bit a good cranberry blueberry bran muffin instead (thanks, Tracy). Tomorrow is another day. We really hope R and J get healthy soon;it has been a long and tiring fall. Both girls are still not 100%, and Rachel has been losing weight because of her recurring reflux. With some good sleep and good health, the doctors stand less of a chance getting bitten.

(Funny part about the day - players from the Hamilton Bulldogs were visiting the children bedside this morning. While other children were clamouring for autographs, Rachel fell asleep. Maybe if one of the puppets from Baby Einstein came instead, she'd stay awake. Sorry guys, but thanks for the souvenir.)



superstarmom said...

Poor Rachel. She is a tough cookie. Maybe she needs to learn to bite a doctor ;) And I love the picture of the two girls. Such beautiful girls you have :)
As for the Bulldogs visit, Ella TOTALLY agrees with Rachel that Baby Einstein is much cooler :)

Carolyn said...

Wow...that's the first time I've ever seen Rachel smile with a hat on! (or is that a scowl?!)

Anonymous said...

The first picture says it all: "Now look here! Do not, I repeat do NOT mess with me."

Personally I think all doctors do deserve to be bitten now and then. Sending love, BWP

Delaney said...

How frustrating! Just to let you know I love my port! Especially the new one I got in July, works like a charm! Although I guess you then need to get it flushed every 3-4 weeks, but hopefully the in-home nurses could do that?

Wishing you guys a merry and healthy Christmas! We'll be down for a few days after Christmas, we'll try to drop by!

Aunt Linda said...

The "Anonymous" comment is wonderful. Rachel has such a look of "bring it on" i agree with her 100%

Frory said...

Thanks for the photos! I agree with the others... "bring it on!" says Rachel.

We also wish you a wonderful and healthy Christmas!

Looking forward to the company party!