What is your opinion on ports? Good or bad

My doctor was reluctant to give me a port, citing the same reasons for high risk of infection. Of what I understand, the line is pretty much straight to the heart which causes great concern for infection. My doctor did approve a pic line inserted when I was receiving IVIG every two weeks. I would not recommend that for a 2 year old, since it can be pulled out. I would think it would be tempting for a two year old to yank on it.

I now get IVIG every three weeks for the past year or so and got rid of my pic line. This may have not been wise. My skin is getting tougher and tougher for the nurse to start the IV. He tells me it is like putting a needle in shoe leather. I would hate for your son to be stuck for the IV every time, as that would not be fun for him. That’s my only “pro-port” argument.

I’ll pray for your little guy and wisdom for you!

Dennis

Hey Lori,

I didn’t know you asked Dr M this. I have thought about it. Mason has a real hard time getting IV’s. He has been stuck sometimes three times. What do people do who have IVIG every two or three weeks for yrs. We have only been doing this since July. I can already tell a difference in his vains.

Friday night Masons IV was leaking out. It dried on his arm it was white flakey stuff. I also felt it on the tubing, it felt like grease. It was almost like Crisco Oil. I just know this is bad for his veins.

Good Luck
Trish

Did you ever considering getting the same nurse to do the inserting? Maybe at a clinic?

My son (now 8) has been doing this for 3 years. I have finally found a wonderful cancer center that has agreed to do his infusions. When we go there are usually the same nurses and we know by trial and error – who can poke and who can not poke without missing.

If there is a new nurse, I give her ONE shot only. If she misses I ask her to get one of the other nurses I know who will get it on the first shot. This is my son and I will speak my mind. especially when he is crying and begging me to have them stop.

We have tried to have it done at home and the nurses they sent were so unacceptable. After 4 different visits and one nurse poked 7 times. I had to take him to the er and they had to put it in his foot. I vowed after that never again, I now speak my mind.

Michele
[email]mmccoy@ucasd.iu5.org[/email]

After 3 months of constant IVs being inserted at Mayo (I was inpatient), I finally had a PICC line put in my right arm. My husband did have to flush it twice a day with saline solution though, after we left the hospital. It lasted from June-Nov when it finally started to leak. Then I had an ash split catheter put into my chest; it had two pigtails coming out of my chest, as it was put in for PP. But once I quit PP, it was used for IVIG infusions, steroid infusions, & then 9 months of cytoxan infusions. I had it in for 15 months with no problems & only had it removed when I was able to get off of all treatments. It was sooo much better than getting IVs put in all of the time. But a port in the chest would be even better, I think.

Hi Lori,
I’m not sure if it would be suitable for a 2 year old, but after getting infections from every Pic line and port they used, I was operated on and had a AV Fistula (?) done on my arm. They put in a link between a vain and and artery, this causes the link to swell and be accessed without trouble.
It is commonly done for diabetics on dialysis. I guess it would only be done for someone that would need long term treatments.

Neil

I really have to get going to pick EMily up from school but I wanted to chime in real quick.

Emily has had both the Broviac (catheder that hangs out) and a Port. I LOVE the port. LOVE it, LOVE it, LOVE it! It has made life SO much easier on Emily. She has very valvey veins so getting an IV in her is so hard. There were times when she was stuck 7 times to get a good line going.

There is risk with a Port but it is VERY minimal. You just have to make sure that ANYONE that goes near it is using 100% sterile techinique. I am SO crazy about that since Emily had the infection in the Broviac. Anytime anything is inserted into the Port you just make sure that you are right there making sure that the nurse has on a face mask on, sterile gloves & wipes off the cap on the end with alcohol before injecting anything into the line. This must be done EVERY time! PERIOD!

The Port has given us Emi’s life back. We don’t have to worry about her getting poked for the IV and when it’s not being used you’d never know it was there. I HIGHLY recommend it to anyone that gets regular infusions and doesn’t want to deal with the IV. Many dr’s disagree with the port because of the risk of infection but I am very happy with our decision to get one.

When you access it there is a needle called a Huber that is used to poke through the skin. It is inserted into the Port and looks like an “L”. It is hooked up to a tube that hangs out. Before accessing the Port,Emla cream should be used on the site to numb it. I swear to you that stuff works SO well. I got some on my fingers once & they were numb for 2 hours. Emi doesn’t feel the poke at all.

Also overtime veins sclerose (I’m not sure if I’m spelling that right), meaning that they harden & it becomes nearly impossible to get a good IV going. Emi’s nurse was telling me about patients that has happened to. It’s always a concern with chronically ill people who get poked alot.

If you want anymore info then just call or email me. I’d be more than happy to send pics of Emi’s to you or to answer any questions.

Kelly

Hi Lori, My son Jeffery (8) is going to be getting a port soon, we just have to wait until we meet our deductable so it will be covered 100% which should be within the next few months as his treatments alone will meet it. His dr was hesitant also, we finally got him to agree as Jeff has had so many polks, his veins are getting alot of valves and it takes serveral polks and he is terrifed every time he has to get his treatments that he breaks out in hives. We will use the Emla cream when he gets his port so he won’t feel any pain, only presure. I am sure that will help. I have seen the broviac on other children and I would be afraid he or someone else would pull it out. At our out patiant hospital we have what they call Child Life, they really help with Jeff they explain what a port is and how it works and the procedure to put it in. You may want to ask. Good luck I know it is a hard decision.

My son is four and has a port for treatment for leukemia. It’s a piece of cake. We use numbing cream before they access and he barely flinches from the poke. My only concern would be finding nurses familiar enough with the workings of a port to access it properly and get it to work properly. My son cannot get chemo until the port flushes and draws, meaning they have to be sure they can get saline in and blood out so they know it’s working properly.

Lori,
I am going to have Abby call you, She was talking to Kayla in Conn. last night about how she loves her port. Kayla is 14 years old and having vein access problems for her IVIG. Her nurse left last Friday without Kayla getting the IVIG and they are working with Mayo to get a port. Abby was so funny trying to explain it to this 14 year old, she made it seem like a no brainer. She is getting her infusion this afternoon I will her her call you and walk you though why she loves it. Sometimes when you hear from a kids propective it makes things so simple.

How was the funeral for those “new Orleans Saints” last Sunday!
Love ya,
Cindy:D