Friday, February 19, 2010

port-cath update

When Sami's nurse, Ellen, came over do to her port flush, Sami started screaming! Her skin on top of her clavical swelled and bruised immediately. We took her to the ER after talking with a surgeon. Found out that her port tube was torn. It's not unusual for ports to only last 2 years in kids because they are so active.

Well, last Friday the 12th, we had surgery to replace it. Quite the ordeal! This is her 3rd port. We didn't know if we should go to Omaha for the surgery or just trust the drs in Kansas City who don't work on OI kids much. We opted to stay in KC and crossed our fingers. It was same day surgery so we were home by 2pm.

Luckily, Ellen came out and gave Sami her Pam. at 4pm while she was still groggy.

The difference in this surgery was that Sami was well aware of what was going on. At age 6 we can't trick her anymore. She understands pain and fears it. Her anxiety of having surgery was hard to deal with as a mom...sometimes you have to hurt them to protect them.

Of course, Sami is a trooper, demanded ice cream and princess movies with her grandpa, and shopping for shoes with her grandma (silver sparkles with hot pink butterflies from Target). That girl can work it! And more power to her!

Now, if I can just get my sinuses to clear up....


  1. Oh geez! Sorry to hear she had to have her port cath replaced again! Yikes, I am so nervous for when that day comes for us. Luckily we are newbies so it should last a while yet! Sonya sends her big princess recovery hugs!

  2. Hi there! I'm friends with Melissa, and I have two boys. Simon is 2.5 years old with an undiagnosed bent bone dysplasia, and Jude is 6 months and AH. It's nice to "meet" you!
    Sami is adorable, and it sounds like she is one tough cookie! I'm sorry to hear that she had to have her port cath replaced. I hope this one lasts her a long time.