Probable upcoming surgery

When we met with the genetics doctor when we got the diagnosis, he mentioned she would receive the first few treatments of Cerezyme via IV and then they will probably want to put in a port so it is less stressful for Hannah. I didn’t think anything of it, as I think I was dealing with the overall picture and didn’t even think to ask any questions.

I have started researching into what all this “port” entails, and it is pretty scary. My baby girl is going to have to have surgery to implant this. Not only that, children apparently grow out of their ports and have to have another surgery to replace them. I don’t want my baby to have to have surgery. I know she may have to have with the alternative with someone trying to get an IV into her little body every two weeks, but surgery just scares me. Not only that, but she will probably need more surgeries to replace the port as she grows.

I have found some helpful information on the CHOP website:
Information About Specific Surgical Procedures: Central Line/Subcutaneous Port

What is an implantable central line/subcutaneous port?
A subcutaneous port — also called an implantable central line — allows a child to receive drugs or other fluids directly into the bloodstream through a large vein. The port, which is actually placed under the skin — usually in the chest, forearm or upper arm — can’t be seen, although you will be able to feel a bump there.

How is it put in place?
A surgeon or interventional radiologist will place the port in your child while she’s in the operating room.

Will it hurt?
Your child will receive medicine so he doesn’t feel pain when the port is placed. For three to five days afterward, the area around the port may be tender and swollen. Your child’s doctor will prescribe pain medicine to help your child feel better.  The first few times a needle is used in the port, your child will feel some discomfort. A special cream, called EMLA, can numb the skin so the needle won’t hurt as much. Eventually, the skin will “toughen,” and your child won’t feel as much discomfort.

How is it used?
To inject medications or fluids, the doctor or nurse will put a special type of needle — called a  non-coring needle — through your child’s skin and into the port. If you’ll need to do this at home, you’ll learn how while your child is still in the hospital.   If your child needs medicine infused (injected) over long periods of time, the needle will stay in the port, with a dressing over it. If your child isn’t using the port, it only needs to be flushed once a month with heparin to prevent blood from clotting the catheter. You can do this at home, or a member of your child’s healthcare team can do it during an office visit.

How to care for it
For the first few days after the port is placed, the incision will have STERI-STRIP bandages or stitches.  If your child has STERI-STRIPS, don’t wash over them; they’ll fall off by themselves. Once they do fall off, you may gently clean the area with mild soap and water.  If the surgeon used stitches, she’ll take them out one to two weeks after surgery. Once the incision has healed, simply wash the area once a day with mild soap and water. Your child may take a shower or bath as usual. The only time the port will need special care is when it’s used.

How long will your child have it?
Your child will have the port as long as she needs a way to get medicine into her bloodstream. When she doesn’t need it anymore, the surgeon will remove it while your child is in the operating room.

How will it affect your child’s normal activities?
For the first five to seven days after the port is in place, have your child avoid rough activities. After the incision is healed, he can resume normal activities, but should avoid contact sports unless he has special permission from his doctor.

Words you need to know
If your child needs a subcutaneous port, you may hear her doctors and nurses using a variety of words you don’t understand. Here are some of the words you may hear — and what they mean:

Catheter: thin tubing attached to the port through which fluid travels to the blood
Continuous infusion: medication given for a period of time through a port
General anesthesia: medication that provides sleep and prevents one from feeling pain
Heparin flush: medication given to keep blood from clotting and blocking the inside of the port
Non-coring needle: a special needle with a flattened, long tip designed to prevent damage to the port. The needle is bent so that it’s flat against the skin when it’s inserted.
Port: the device placed under the skin to allow medication and fluid to be infused directly into the bloodstream
Septum: area on the top of port where needle enters
STERI-STRIPS: thin bandages covering the incision.
Subcutaneous: layer of tissue underneath the top layer of skin