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Ports, Parents' Comments
The following are parents' comments on ports. As per the disclaimor at the bottom of this page, they are not meant to replace medical advice.
Which type of port to choose or whether to have one at all
"My son had a double lumen right atrial catheter and yes, it was nice to be able to hook up two things (or more, at the hospital)."
"My son didn't swim and hated pokes we decided on the external central line." (With a medi-port, the port is accessed through a layer of skin, requiring a needle poke, although the skin gets pretty tough after awhile.)
"I really wish someone had told us the size of the scar we would be looking at and we would have really considered avoiding the port all together. Another child my daughter's age did not get a port at all and was in the hospital much less time for infections, thus also avoiding the stoppages of chemo."
"The problem with the external central line is that it needed to be flushed with heparin (at least) daily. We did dressing changes 3 times/week (daily when he was neutropenic) and he wasn't allowed to get it wet." (Medi-ports are only flushed once a month.)
"Our daughter has had both. First the port-a-cath which they took out because they thought she had a infection in her blood. Then we got ourselves an external central line. I thought she would freak out when she saw two tubes coming out of her chest (she has a double lumen). To my surprise it was hey look at my tubes!! I think the excitement was the fact she did not have to get anymore pokes."
Advantages to learning how to access ports yourself
"When my son had his port-a-cath and later a central line, I was taught how to access them by an IV nurse at the hospital. The whole thing became so much less traumatic for him, I was happy about things being done in the right way and best of all was able to take his blood tests at home. I was also able to give him his IV drugs at home, including infusions and some chemo."
"When we had to visit the ER, often no one there had seen a port nor had any idea how to access it."
"When we get blood draws at the clinic, I can do it and hand the clinic nurse the blood draw instead of waiting for a nurse to take it."
"I can relax when travelling because I know that whatever hospital he may end up in we'll be OK with the port access. I've packed a little kit with a thermometer and supplies for 2 or 3 draws that I keep in the car."
"Even if parents don't want to learn to do access the port, I'd strongly encourage them to learn well the steps involved (whether a port-a-cath or a central line) in hooking them up, flushing etc. During a long stay in our local hospital I caught the staff using the wrong syringes on numerous occasions."
Swimming with a port
Some doctors and parents say it's okay if the port is well wrapped, some say never swim with a port. Read on.
"Our onc doctor's policy is that if the ANC is over 500, the external central line can be wet (chlorinated pool only) for one hour, and the dressing must be changed immediately after."
"Public pools are not always safe from bacteria."
"We got my son a 'Dry Suit' so he could swim in the sea without fear of infection even with his central line - these are the water tight suits used by divers - it was a bit unglamorous, but he was happy to wear it even to water parks. They suits are usually very expensive, but a very kind man who had had a sick baby with a central line a few years before organized it for me. We are going to give it to our hospital so it can be used for other sick kids."
"I think we were also told that our daughter couldn't swim because she has an exterior central line. When we went to Disneyland we let her go in the pool and I just put extra band aids on. She loves to swim and I just can't see letting her not go in the water, we just take extra precaution. Not sure that is the right thing either, but oh well."
Our daughter was allowed to swim in a private pool if ANC was over 1000. No public pools and never the ocean."
"We were told 'don't.'"
"Same here!! We even had to cover his port when he showered."
"Our hospital's policy was that the child could swim in his OWN chlorinated pool, but not a public pool. Also, no fresh water lakes or salt water either. Also, he wasn't allowed in the pool if his counts were less than l000. We were told no swimming in the beginning, but later they changed their opinion as long as the line was covered with a tegaderm dressing and the dressing was changed immediately."
"My daughter has a port a cath and is allowed to go swimming."
Port care: if Tegaderm causes a rash
"Use paper tape and saran wrap to cover it when it is accessed. Turn back each edge of the paper tape to form a tab, making it easy to pull it off."
"Apply a piece of duoderm, with a small whole cut for the line to come through, place the loop on top of the duoderm and secure it with tegaderm (two or three medium sized). The only tape to touch the skin is the duoderm, to which he doesn't react."
Getting ports to draw
"Regarding the Urokinase: inject, let sit, attempt to redraw, etc. Never did they call it liquid plumber for the line, but that's exactly what it was!"
"The only things that have saved us from getting needle sticks is a smaller syringe for withdrawal, 3cc works wonders. Also, have your child stretch. That works better than moving around and arms over head etc."
"We have had this problem [port won't draw] lots of times. It can be caused by not having the right diameter needle or sometimes the needle isn't in the center of the port when accessed. We have never had this happen when we go to the outpatient clinic, but it usually happens when we are inpatient and get accessed. I was told that some of the ports float around a little bit and that some nurses are afraid to hold it in the right spot when accessing. I would see if they could maybe reach the port again, to see if that helps, it has for us several times in the past."
"Have you tried applying pressure to the hub of the port-o-cath (pushing in with your thumb) while trying to draw back? Also, have you ever tried waiting for a longer time (~2 hours) after putting in the urokinase before trying to draw blood again?"
"We have on occasions had problems with drawing blood but we found that if he took a deep breathe while they were drawing blood that helped. Also we had a different problem. Our sons port-a- cath split his skin causing a scab and then when they put the emla cream on it softened the scab and it came off leaving a hole."
"My son had a very bad blood clot in his port-a-cath...In fact he had two.... He was put on Lovenox (low molecular weight heparin for three months twice a day) We went for an ultrasound last week and it showed that the clots are mostly gone now. Try having her cough when blood is to be withdrawn."
These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.