Monday, July 27, 2009

Busy weekend

Well I guess it started on Friday. Haven was suppose to get her IVIG Chemo on Friday. This is usually a 6 hour chemo but with her levels doing pretty well they decided not to give it to her and would wait a couple more weeks.

Instead Haven received an immune booster in the form of a shot - she was not ready for this and neither were we but she made it through pretty well. This will be tested in 4 weeks to see how her immune system is handling it.

Then we have had a lot of issues with the tape staying on Haven's body. Normally we're supposed to change her port dressing once a week. But with Haven we have to change it every 2 days. It just won't stick to her. She had it changed on Friday and this morning she woke me up saying we had a tape emergency. So I had to change it this morning. I came home from work tonight and the tape is already coming off again! I know the home care is getting irritated because I keep calling and they keep asking why I have to change it so much. Last week we had to change her 3 times.

Last Friday the doctors listed Haven as high maintenance on her port. Which means the risk is greater than the benefit. They want to have surgery to remove it as soon as possible. We just can't keep it covered. They said some patients just can't wear the tape - the skin rejects it. Of course, I would have that rare child! :)

Saturday we did a lot of house stuff but we did get to go for a walk!

It wasn't windy so we let her take her mask off for the picture. She is wearing a new scarf she got from my friend Lisa.

1 comment:

  1. Haven, you look absolutely beautiful!! What an awesome job you did on your scarf. You sure have artistic talent. Hope you feel better soon!

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