Did your body try to reject your port?

    • Anonymous
      May 31, 2007 at 10:21 am

      We are still trying to get a port for Dell. He’s 3.

      I already know about if he has a fever, we have to have the port site checked but did anyone’s body try to reject the port.

      I want to be able to tell the dr. about other patients. I always talk about ya’ll to him.

      Thanks for your help.
      Lori

    • May 31, 2007 at 3:45 pm

      HI Lori, I have no idea if this is relavant, but since he gets ivig, he should be ok. Transplant patients actually get ivig to fight off rejection, so I would assume that this might be the same thing? Dawn

    • Anonymous
      June 1, 2007 at 2:19 pm

      Hi Lori,

      I have never heard of a patient’s port trying to reject itself. Why do you think Dell’s body would reject a port? Just curious.

      I do know that transplant patients can have rejections of newly received body parts.

    • Anonymous
      June 1, 2007 at 2:40 pm

      I guess I should have explained it a little differently. By rejection, I mean, the immune system.

      Dell’s immune system is always looking for some reason to have a fever. He had one Monday, never had it again until Wednesday. His immune system has never calmed down.

      Thanks, Lori

    • Anonymous
      June 1, 2007 at 3:49 pm

      A port rejection *could* happen theoretically. It’s a foreign object being placed into your body. There’s always a chance of the body going haywire because of it.

      Honestly, I’m not sure if Dell would even be able to get a port because of his size. I was told by Emily’s surgeon that it was difficult to put hers in because her veins are so small. It’s worth talking to a surgeon about though. Maybe they have small ports for smaller kids…I dunno.

      If the port option isn’t available I would highly recommend talking about a Broviac Catheder. It’s kind of a pain in the butt because kids can’t bathe (showers only), you have to worry about making sure it’s secure & it needs to be flushed daily. I’m not going to lie, in the beginning, it’s pretty scary. But as time goes on, you get used to it & it’s not as scary anymore & it becomes like 2nd nature. I know you said before that you would worry about Dell pulling on it. Emily’s nurse said that with smaller kids there’s a mesh tube top looking thing that the put over the area to secure it so it can’t be pulled.

      Also, with his fevers it’s easier to remove a Broviac than it is a port. They put Emily under “twilight sedation” and just pulled it out. The port is a “real” surgical procedure & would require complete sedation to remove. In the event of a bad fever or other concerns it would be easier & safer to remove a Broviac as opposed to a port.

      And also it would take a REALLY strong pull to remove it. One time Emily was hooked up to her IVIG pump with the Broviac. Without thinking she got up & ran across the room without bringing her pump with her. She stopped running when the length of tubing ran out & she was literally pulled backwards. The Broviac was pulled HARD that time & it didn’t even budge. I thought for sure that she had pulled it out but it stayed in there.

      Anyways…I just wanted to give you another option in case you can’t get them to agree with the port. A port is easier & less stressful but I’m not positive that it would be right for Dell right now, with his wierd fevers & all.

      Good luck.
      Kelly

      PS. Make sure that you get a GREAT surgeon to put it in. I had complete trust in Emily’s and it makes a world of difference when you know that you have the best.

    • Anonymous
      June 1, 2007 at 10:51 pm

      Kelly,

      Thanks for the info on the broviac. I will look it up, gather my information and email the dr.

      I have not heard from him, I was hoping he would write about the nurse we had the problems with.

      Thanks again,
      Lori

    • Anonymous
      June 2, 2007 at 11:11 am

      Hi Lori.
      I have an infusaport placed in my upper left chest. I have had it for approximately two years and have not had any problems with it. It was placed so I could receive the IVIG therapy and because they were not able to access any veins. It has been a blessing. I had to have a breast biopsy done in november and they used my port. I realize there are risks with it but there are also a lot of benefits. take care

      sherry