We have a son with severe Hemophilia. He has to hav IV infusions twice a week. For 2 years, we used veins twice a week and he developed some serious emotional issues because of all the needles.
Finally, we put our foot down and went to a new clinic where they agreed to give him a port immediately. The night after surgery, he had significant pain at 3am. Beyond that he never complained about pain again. Because of his Hemophilia, we kept the port accessed the first week after surgery because he was getting infused every 12 hours. At a week, it was deaccessed and we went to what we live with.
If you aren't using the port within a month, then yes you need to flush it, first with saline and then fill the line with Heparin to prevent blood clots.
For the first year, Ch wanted us to use LM-X on the site before we accessed it. So, we did. But, at some point, he discovered that the scar tissue has built up and there's no pain or discomfort with the needle. So, now we skip the lidocaine cream.
The reason it doesn't hurt at much is because you are only sticking the needle through the skin. Immediately under the skin is the hub, or opening of the port. It basically looks like the top of a vial you would draw medicine out of. Its a hard rubber ring with a soft rubber bulls eye. So, you take the needle, aim for the middle and jab through the skin.
And, if you miss the first time, you don't pull the needle all the way out. You just pull back a little, keep the needle tip under the skin, find the bulls eye again and re-jab.
The MAIN thing about accessing the port is not that its complicated but that you absolutely 100% MUST maintain sterility. This means you need to carefully clean the skin, maintain a sterile field for your supplies, wear sterile gloves and YES wear a mask. We're quite obssessive about Ch's port. NO ONE is allowed to access his port but mom and dad. We know we will maintain absolute sterility because its our child and his life on the line with it. And, at whatever point M deteriorates to have a port again, only mom and dad will access his as well (some nurse in the hospital nearly killed M 2 years ago by giving him a MSSA infection in his port line, now that he's our son that will NEVER be allowed to happen again.)
It was a little weird the first few times we accessed Ch's port. The Huber needle is a 90 degree angle. So there's a bit of a mental process about stabbing your child or yourself directly in the chest with this needle that goes straight in. But, the truth is that its not long enough to go anywhere unsafe.
I would take a port over repeat PICCs any day of the week. We've kind of freaked M's CF doctor out because we're so pro-port. But, the reality is that a port is just NOT a big deal to us. Because we access one twice a week, we don't think much about it. When its not accessed, there's just a small bump on Ch's chest. If his shirt is off, someone might notice. But, otherwise, it doesn't stop him from living a normal and active life AT ALL.
In fact, Ch loves his port so much he has declared he will never agree to getting his port removed and if it fails, he wants a new one put in.
