Continued...

“Reba” asked…”I also am interested in the health care process for Belane. What does having an HIV positive child involve? What is the medical situation like. What is the life expectancy. If you want to speak in terms of generalizations instead of specifically Belane, that works too.I know you touched on it before, but I am curious about the reality of it.”

So far, the reality is that having Belane is not any different than any of our other kids. One of our big worries was taking on a “high needs” child, because we have sort of been through the ringer with our Marcus (who is doing awesome now though!).

Our Ped. Infectious Disease Specialist told us that most of the HIV kids he sees are NOT high needs…they take their meds twice a day and do great…with little to no effects or complications from the HIV. St. Judes said the same thing, as did the parents of HIV kids that we spoke with.

You do not need to do anything different in regards to bathing, feeding, dishes, laundry, hugs, kisses, etc. etc. etc., with the only exception being when blood is involved. When blood is involved, you should wear rubber gloves, clean up with something that can be thrown away, use bleach to clean any hard surfaces, and wash any laundry with blood on it separately.

I put together a little ziplock bag with a few rubber gloves, Neosporin, some bandages, some Clorox wipes and some paper towels in my diaper bag, and have that stuff on hand here in the house too. That’s really the only extra care that needs to be taken, although there are some common sense things, like not sharing tooth brushes, as mouths tends to bleed a lot, and not sharing razor blades.

I read that the only case in which a family member has contracted HIV from living with a positive family member occurred when a razor blade was shared for shaving.

As far as life expectancy, no one will give you any guarantees, but all of the professionals we have spoken with have said that Belane and other kids are expected to live well into adulthood just with the medications available now, and the meds are getting better all the time.

Kids with HIV have every chance to live long, full and relatively healthy lives.
The most important aspect of caring for a child with HIV is giving the meds routinely. Drug resistance is the biggest threat to a child with HIV, and that can be avoided by giving the medications at the set times and not missing any doses.

So in a nutshell, our day to day life with Belane will not involve much “extra” work or be much different than parenting our other kids. We will take extra care with blood, she will have quarterly, possibly bi-annual doctor appointments, and she will take her meds twice a day. Beyond that, we’ve been told to expect her to thrive and be as healthy as our other kids.

My good friend, who is parenting three HIV+ kids recently wrote, “Something I was told by a Dr. recently really rings true...she said that any more, treating and parenting HIV positive children is pretty easy!”

Of course there are never any guarantees, but none of our other kids came with one either. 