Sunday, January 10, 2010

HIV: The Next Step....

Kendi's labs are back from Ark Children's. There is good news and bad news. The good news is that her CD4 count actually went up by about 500--up to 1927! Her CD4 percentage is still very good at 42%. [Basically, we want CD4 cells. They help to keep her healthy. These numbers indicate that Kendi's immune system is still functioning just like any other healthy 2 year old.] The bad news is that the copies of HIV virus in Kendi's blood have gone up significantly. She had about 47,000 copies of the virus at her last visit. This visit, she had 106,000 copies of the HIV virus in her blood. Our goal is that eventually Kendi will have under 50 copies of the virus in her blood, but since she's never taken ARVs before that would be impossible at this point.

Kendi is right on the bubble. Our doctor wants us to consider starting ARV therapy since her viral load is over 100,000. I am in favor of that and believe that's what will be best for Kendi in the long run. We will probably be heading back over to Arkansas again in the next few weeks to work out the details. I'm bummed about having another 10 hours in the car, but of course we do what we have to do!

Up until now it's been pretty easy to forget that Kendi is even HIV positive. Honestly, after you have your positive child home for a few days you don't even check yourself with things like sharing a drink, or a fork, or a slobbery kiss, etc.. [The first few days there would be a tiny check--a tiny reminder that it's totally okay to share in these things. After that, even the tiny checks disappear.]

For the past 4 months we've just had Kendi alone, without reminders of the virus she carries. Now we're entering into another era of her life. She will never again be without these medications. Ever. From here on out she will have to take medicine twice a day. It is so NOT a big deal. It's just going to be a reminder that as healthy and vibrant and ALIVE as she is, it is that medication keeping her that way. We should be used to this with a Type I Diabetic in the house! LOL! And I suppose we are. I just sort of hurt for my baby. I think about the days that she won't want to take medicine. I think about the days when she might want to rebel and stop therapy all together (which scares me to death)! I wonder how I will go about teaching her to feel positively about the medications.

On the practical side we're going to have other challenges. The child is so NOT a good medicine taker. She gags and throws up most of the time with any syrup medication. Interestingly, she happily chews up a melatonin tablet without a second thought. We'll have to consider whether crushing pills into pudding-ish foods will be better, or giving syrups that taste a LOT worse than children's tylenol. I'm leaning towards crushed tablets. They say when she is old enough they will teach her how to swallow pills. Her doc said that is around 5 years old. Interesting, because I think all of my kids could swallow pills before that age.

The next step. Medicine. Therapy. But that will lead (trustfully) to health and long life. Well worth it. Off we go...

7 comments:

Tricia 12:47 AM  

Sweet girl. Off you go is right.

Kristin Jag 1:56 AM  

Your last couple of posts are straight to the heart. I feel for you and can sense your reluctance, yet knowingness. You are in my prayers as you move to the next stage and I pray that the medicine is easier than expected!

PositivelyOrphaned 10:35 AM  

Hope the transition goes smoothly and it becomes a regular easy part of life.

whenpigsfly 12:15 PM  

I was just getting ready to post about Naomi's numbers when I read your post. ITs almost easy to "forget" the diseases which hide in our children, but yes the reality is meds and frequent check-ups and monitoring,and continued prayers for our daughters. I bet she could swallow a pill pretty soon. Naomi takes her anti-viral meds in liquid form ,but is able to swallow a dramamine or a tylenol tab when she needs them. My kiddos all HATE liquid meds and prefer to gulp and gulp lots of water to swallow any pill med instead. Trusting God with you for Kendi to heal from any and all infancy-era hurts and traumas through HIS all-capable healing Hands, and for her body to be healed of this Virus as well!
Love
Linda

SupermomE11 12:27 PM  

Anita,
For what it is worth, we taught Belane to swallow pills before she was three and a half, and we taught Solomon how to swallow pills at two and a half. We started with Tic Tacs and showed them how and they both got the hang of it REALLY fast. Kendi is so smart, I bet she could do it! :)
Good luck. I was super emotional when Belane started meds...
Hugs,
E

Shea 4:42 PM  

They were hesitant to start O on pills, but I taught him and the pharmacist brought placebos down and I showed her right there he could do it, and they believed me then. Pills have been so much easier! My oldest daughter was on long term meds and learned to swallow steroid pills at age two.

KamPossible 2:41 PM  

Prayers....I have a house full of prayers going up for the little girl!