a port will be a blessing
Hello, I am glad to hear that Kevie is getting a port. It really is a blessing for children to not have to be stuck a lot and to have to have people search for veins if they are hard to find. Ports are also safer from infection and more compatible with “real life” than a broviac or a PICC line are anyway. I work at a Children’s hospital with lots of kids with ports or lines for treatments including IV IgG. It is a blessing really. At our hospital, the ports are always placed with the child asleep with anesthesia so there is less stress. We have a manikin “Chester Chest” to show kids what the port looks like–it is like a 1 to 1 1/2 inch button under the skin of the upper chest. We use LMX4 numbing cream (with lidocaine) to put over the port before accessing it with a special needle so that it does not hurt the kids. Some kids use ice or “freezy spray” instead, but most families put the cream on before leaving home and the skin is numb by the time they reach clinic. Women often have the port placed higher up near the collarbone as Miami Girl had, but most children have it put lower so that it is hidden with clothes and less likely to get bumped. Kevie should know that the port is usually sore like a bruise for about 3-4 days after it is placed because the port is slid under the skin and after that most kids can forget about it most of the time. The really nice thing about ports is that you can still swim and bath/shower with it in because it is under the skin whereas with a broviac or PICC line, you have to be really careful because the tubes come out of the body. Some kids getting multiple days of treatment leave the port needle in until it is done, but others get “reaccessed” each day so that they can be normal (and sleep on their stomachs if wanted!). The three biggest things to know about a port are also 1. often there is swelling and tenderness right after the surgery so that it is better to have it accessed in the OR and kept accessed the first time until the treatment is over. The discomfort is much less if it is accessed in clinic for the first time several days after the placement. 2. It is a foreign object in a person’s body and there is a risk of infection. Each hospital has their own rules about ports, but most say that any child with fever and a port/line needs to be evaluated (seen by a doctor and have a blood culture done) to make sure there is not an infection in the blood stream especially if the port was recently accessed (so that there is a possibility that an infection might have gotten straight into the bloodstream). This is not likely, but we tell everyone that children are precious and it is better to be safe because children can get sick really fast. Infection in the bloodstream is especially important to be careful about if there are chills with the fever or dizziness. I do not mean to scare you, but it better to know this and stay safe. 3. We have lots of kids that are so thankful after the port is placed because it is really easier on them. I am sure Kevie tries to be brave, but it is hard to deal with illness, differences from your friends, and pain from someone searching for a vein to start an IV. The port is easily felt through the skin and the needle goes right into the right place. A port can stay in place for years as long as it does not get an infection or a clot or have trouble to work. At every hospital I have worked, the rules are that the port has to be “flushed” with heparin at least once a month, although occasionally places space this to as long as 6 weeks (again, in my opinion, it is better to flush it monthly and be less likely to get a blood clot in it so that it keeps working well than to take chances).
As far as brands, there are many good ones and there are ports made for children that are smaller and thinner due to the thinner skin layers in children. I would suggest this if possible and a single lumen port. The port needles used for children are also shorter than adults so that it sticks out less and is more comfortable. Often we have families keep a (sterile) needle of the right size at home to have available to use if needed since many “adult” hospitals and home care agencies mainly stock just the adult sizes.
One another thread you mentioned the stress that you all are feeling. There may also be a social worker associated with the clinic that could help sort through the best way to approach this. One thing that we try hard to do at the hospital where I work is to try to let kids be as normal as possible and to also try as much as possible to help make their paths a little gentler as they go through illness, by minimizing pain and scaredness. Children are not little adults and there are a lot of simple ways that help them get through illness. A port-a-cath will really help as will using the LMX4 or EMLA numbing cream and making sure the first access if not done when the area is swollen and tender just after placement.
I hope all this helps Kevie and you.
With hope for cure of these diseases (and childhood cancer!)