This week I am going to dive into the pros and cons (from a caregivers perspective only) of choosing to have a PICC line placed into your DIPG/DMG child. Please always consult doctors and take their best medical advice but my hope is this will help you to be prepared and have questions for your doctors ready.

Pros of a PICC line:

• Its temporary. You have an end to this medical supply and when it is over you feel you hit an end to something.  When fighting DIPG/DMG there are very few things that feel like a “win”- getting a PICC line out feels like a small win.
• Not as invasive surgery. Although you can see it more out of the skin, at least in our experience, the incisions once the line was pulled healed better and was less noticeable than the port scar.
• Talk to your doctor about the medical benefits for your current situation.

Cons of a PICC line:

• Its temporary- if you need access more regularly you may still need IVs or other PICC lines placed. Ask your doctor about your circumstances.
• Regular access to flush it when not seeing doctors so more work at home for caregivers. They will train you in this and if they don’t make sure to ask for training and extra supplies to have at home just in case. Weather and emergencies happen so always be prepared.
• Physically sticks out of child so if your child is active and moving, going to school or has siblings the fear of it being pulled out is real. You will need to come up with solutions to keep it safe as best you can. We used cut up socks to go over hers so she picked fun cheap socks for designs and they were a little more cushioned and easy to wash and reuse. They sell covers and homemade ones as well you can find online. It just depends on what works for you the best.
• Dressing has to be cleaned reasonably often, which for us was a con since Mary was allergic to chlorohexidine and betadine takes so much longer to clean with but this allergy isn’t super common.
• It is removed when the child is awake which made Mary nervous and as a mom was hard to watch come out of my child. Be prepared it is long. Mary said it felt weird and was scary to be removed but didn’t necessarily “hurt” but it is different for each kid due to levels of pain tolerance and situations when it would need to be removed.

Questions to Ask:

• Do we think they will need this longer than it can be in or again at a later time?
• If they go into a different trial is it likely they will need another PICC or a Port at a later time?
• How much at home will we need to do to keep it safe/clean?
• When would we need to remove it?
• Signs of infection to watch for?

Next week I will discuss my caregiver view on Ports.

Until next time- hug your kid and those you love a bit more today and Mary- love you, miss you, mean it.