Our CFer lost his port when the hospital where he was a patient caused a nonsicomal infection in his port (septic staph infection which nearly killed him and put him in the PICU for a week).
However, we have a port in our Hemophiliac son and it will be remaining long term. We had a 2 year battle with his Hemophilia team where we ultimately choose to drive 3 hours to a different Hemophilia Treatment Center because his doctors flat out refused to even consider a port. He came home at 4 years of age and immediately began to endure at least twice weekly infusions through his hands and feet. The trauma of this contributed significantly to the attachment issues he now struggles to overcome. We knew beyond a shadow of a doubt that having a port would remove the bulk of the trauma which comes with his treatment and would allow him to relax and begin to heal emotionally.
Because he has severe hemophilia, port placement was an overnight hospitalization. Dh took him in before the buttcrack of dawn on a Friday. Surgery was done mid-morning and they were home afternoon on Saturday. We had to infuse him daily for a week to control the bleeding issues for him. But, after that week, they deaccessed his port and we began accessing it at home twice a week.
Its been 8 months since we had the port placed. At this point, the plan is to keep the port in place until he learns to infuse himself and is ready to take over. That's a different plan of care than a CFer would face. But, the lack of stress, emotions, fear and the level of cooperation the port has brought us was worth every mile we drove to get it in place.
My only regret was that I had realized I could travel 3 hours to a different team of doctors 2 years before hand. We wasted 2 years of our son's life on nonsense. Now, he has enough scar tissue at his port site that if its an emergency, its still easier on him to get infused in the port without being numbed than to endure needles in his hands and feet.
I will say that we are super cautious about accessing his port. We don't allow ANYONE to access his port until we are standing there breathing down his neck. And, while that is our parameter for access, the reality is that only 2 people in this world have accessed his port since surgery, and that's Dh and myself.
The downside to a port is that complications can be very serious and even life threatening. Dental care is a PITB. But, in the last 8 months, this child has never spiked a fever, so has never required we get antibiotics for him. I don't like the reality that we will need antibiotics for any ordinary fever. But, its worth the pay off for what its done for our son.
Our CFer doesn't yet have a port. But, when the needles become more frequent and consistent, and they will obviously, its a no brainer for us. We'll immediately go back to a port long before we'll endure more than a couple PICC lines in him. The port is just SO much easier for us. And, its so easy for our son to be relaxed and lead a normal life. For us the question on our CF child is not will he get another port but when will we need to go down that road with him. Now is definitely not the time for him. But, that time will come.
FYI, our son with hemophilia is already learning to infuse his own medications in his port and he'll be 7 in May. He'll infuse via port before he'll learn to infuse his hands and arms and once he learns, he'll take over his port infusions even at a young age.
