Well, the big day in my 10 year old sons life has finally arrived! He has his surgery scheduled to have his port removed. For 10 years I have been telling him that when he was old enough and mature enough to learn to self infuse using his veins, we would have the port taken out. He has asked to go to different summer camps, to his cousins house out of state ALONE with out Mom, weekend trips with friends and family and Mom has to go because Mom knows how to infuse or he has to pass on the trip because he can't go by himself.
About a month ago he contracted a bacterial infection in his port which went into the bloodstream. He was a very sick little boy. Thru 4 days in the hospital, IV antibiotics for 2 weeks, no school, very limited and restricted physical activity and his doctors saying it was time to get the port OUT, he learned to self infuse. Motivation is a wonderful thing.....he got the vein the first try and we are on our 6th successful self infusion. Mom supervises now. It is very liberating for him.
My question to you Mom's, how did you deal with the surgery of getting the port taken out. I am nervous about that. I am nervous that my security blanket (the port) is being removed. Easy access in an emergency. I have met some great Mom's on the west coast and they have never used a port to access there child as they have always used the veins. I feel selfish but worry about the longevity of his veins for the rest of his life.
I would love for any insight you could give!
Suzanne
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I'm curious as well. My son will be 4 in August and has had his port since he was 9 months old. I know sometime in the near future we are going to be having this port taken out and probably a new one being put in. Not looking forward to it one bit. But I can't say enough good things about his port. It saves me! Fortunately we haven't had any infections/problems with his port thus far.
How did you know your son had an infection in his port? Was it a fever that brought it to your attention?
I am on the other end, my doctor is telling me that I SHOULD put a port into my 20months old, but having him go through surgery scares me so much. I would love to hear your experience.
Thank you,
Tatyana
Well, I can only share a positive expereience as well. My son had his 1st port at age 20 months. The out patiend surgery went very well for him. He was sore but at that age they are so resilient. His second port was put in at the age of 4 and was taken out just last week. He had the second port for a little over 6 years. Having the port at that young age was a blessing to my husband, myself and the doctors so that they didn't have to search for veins as he is a healthy child. Born at 10 pounds he had lots of rolls. :)
It was easy access. I don't think I would do it differently if I had to do it over again. He is 10 now and has been self infusing for a month. Sounds young, but he is at the age where he is wanting to go away to relatives and for the weekend or spend the nights with buddies and he can't go if I don't go with him. It is turning out to be one of the good life lessons where he is recognizing he is mature enough to handle it and must be responsible enough to handle it too.
He had this second port removed because of an infection. We learned it was infected by symptoms. He started with what we thought was a stomach bug, a rash all over which we thought was a viral infection, followed by a high fever, chills and discomfort. Any time he has a temp of 101 or over we are to call our HTC and they like to test the port for infection. It is a safe guard that saved him. I learned you don't mess around with the infections as it can get serious quick.
Hope that helps you both.
Suzanne
Tatyana,
Our son got his port at 13 months (he is now 2 1/2), and even though it was very difficult for me emotionally to have him taken away for surgery, it has been the BEST thing for us ever!!
He'd had several bleeds before the port was placed, and it would take usually 3-4 attempts before we could get a good vein to administer factor. Overall, a TERRIFYING experience for a young child. SO we knew a port would be best for him.
He has not had a single bleed since the port was placed - i infuse him 3 times a week, and he helps out already. It's truly a blessing to be able to treat him regularly and prevent injuries.
The surgery itself was very quick - only about 45 minutes - and his recovery very fast as well. Those surgeons know exactly what they're doing, and even though the thought of surgery on a kid with hemophilia is scary,... doped up on factor, kids pull through just fine.
Good luck!!
My son is 9, he got his port when he was 16 months old. He hasn't out grown it and never got an infection. We are starting to talk to him about self infusion and hoping that this summer we can start. The surgery for the port, itself wasn't a problem at all he was up and playing within hours. Over the years his only complaint is the bump. We are lucky that swim shirts are in style because he could have been born a fish.
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