More questions answered

Information given to us by Ly, the nurse that will care for McCoy during his fills (weekly), who works under Dr. Burns.

What will the recovery room be like at the hospital? Since we're staying for the night (23 hours), I'm wondering if there will be a bed for us to sleep on, or is it just a chair, or couch?

I don't know how the hospital room is set up. I know that he will have a bed but I'm not sure if it will fit both of you. I can find out and let you know.

Can the expanders become infected, like the fluid inside, or is it the skin over the expanders that sometimes becomes infected? Or can infection occur both ways?

Usually infection involves just the skin, the port, or the incision sites. I have not seen the fluid inside the expander get infected. If there is any infection, the skin will become very red. If this happens, we will stop expanding that expander and treat it with a course of antibiotics.

Should I shave/trim the hair on McCoy's nevus prior to surgery? I have heard about adhesives on incision sites sticking to the hair. If I do shave it, will it be itchy?

The OR staff will shave a little bit of hair where the expanders will be inserted. The ports will be under the skin where the nevus is. You will need to put some adhesive bandage over the ports once you put the numbing cream on (numbing cream goes on the port sites before each fill). It may be be better to shave the hair so that it won't bother him so much when we remove the adhesive during the expansion (fills). You can also ask the hospital staff to shave it in the OR also.

What medicines should I have on hand at home? Any? (Particularly for right after surgery).

He will be given 2 medications: antibiotic to prevent infection and a pain medication, usually hydrocodone or Tylenol with codeine.

Is it true that custom expander are less likely to get a leak than standard expanders? I'm feeling anxious about this as our friends the Bellavigna's experienced a leak in their son's first expander, and then another leak in the replacement expander. We are having standard expanders placed.

Not necessarily true. Both types of expanders are at the same risk of leaking since they are made of the same material. I have seen both leak.

What will recovery be like? What should I expect? How many days should it take for McCoy to feel and act his normal self (worse and best case scenario/most common outcomes)?

Recovery time is usually about 3-5 days. He will be most fussy and irritable the first couple days. He may have a decreased appetite and may just want to be held. You may want to give him pain medication every 4 hours initially, then every 6hours, then every 8 hours until he is back to his usual self. Worst case scenario will be that he does not feed enough and becomes dehydrated or has an infection right after surgery.

Lastly, I remember Dr. Burns mentioning that traveling while expanders are in is okay. However, I wonder how realistic this is, and what your thoughts are on trying to take a road trip the last week of March (4 weeks after surgery), that requires a 4 hour drive? Will he be very uncomfortable? How many fills will he have had at that point?

The fills begin 2 weeks after surgery to make sure the incisions are well-healed before putting them under more tension. Dr Burns will inject some saline into the expanders in the OR to make sure they are working properly. McCoy will go home with the expanders and some saline in them. We usually start the fills with a small amount initially and slowly advance during the subsequent fills.

Dr Burns is ok with traveling. At 4 weeks post-op, we will only have completed 2 fills. He should be fine sitting in a car seat during this time for traveling. It becomes more difficult and uncomfortable once the expanders become large.