Wednesday, September 08, 2010

One Year with HIV

Not only are we celebrating one year home with Kendi, we've also passed the mark of living with HIV in the family for one year. I thought about not even doing this post, because really there isn't much to say. It hasn't been some traumatic even to "get through." Her HIV is a non-issue 99% of the time.

September 9, 2009: Kendi was sick upon homecoming and her new Pediatric Infectious Disease doctor at Arkansas Children's wanted to see her immediately. We didn't think her HIV was an issue, but it was best to make sure. So, the day after homecoming she took her first road trip--10 hours in the car. Fun! NOT! Kendi was just sick with a virus. We learned that her HIV numbers were still very good. No need for her to go on ARV medication at this time.

December 2009: Another trip to Arkansas, just to see how things are going. Testing revealed that after 2 years and 6 months living with the HIV virus, it was time to begin ARV therapy for Kendi. She would try crushed pills mixed with food or liquid. Two medications, two times daily.

January 2010: Umm...taking medications...not so much! Kendi could not handle the bitter taste of the crushed medications. She vomited. [They are HORRIBLE tasting, mommy can confirm.] We tried liquid versions of the medications with the same results. Taking the medications was a traumatic event for Kendi. She stopped eating and drinking because she was afraid that everything would have that horrible bitter medication taste. On to plan B....or G, as the case may be.

February 2010: Kendi went to the hospital to receive a G-tube/mickey button. This is a feeding tube that we use solely for the purpose of giving her medications. We thank our lucky stars that this sort of intervention is readily available here in America, and wonder what the outcome would have been for her if she had still been in Ghana. Medication is no longer anything to fear for Kendi. She begins to eat and drink normally again. Bye-bye medication trauma! Until she can swallow pills we will use the mickey button (may take several years for her, because she now has a severe aversion to any sort of medicine).

Spring 2010: HIV is a non-issue. However, she is eating less and less. She's not just picky. She won't eat even her favorite foods. Growing concern in the mommy heart, but I try to let it go, thinking I'm being over-worrisome after Samren's issues when he was a baby (failure to thrive, couldn't eat, etc.).

June 2010: Back to Arkansas for a regular visit. Everything with HIV is fine. The virus is UNDETECTABLE! This is the gold standard for ARV treatment! There are less than 48 copies of HIV in her blood--down from almost 200,000 copies just a few months earlier. Amazing. But, her lack of eating has resulted in a lose of weight. She's back down to 20 pounds--her weight 9 months ago when she came home from Ghana. We brain storm and decided that the symptoms are most like "delayed gastric emptying." She is prescribed Reglan 2 times a day, 2 hours before her other medications (no lying--this is an inconvenient schedule because her ARVs are given at 7:30, which means we're getting her up at 5:30am to do the first med).

Summer 2010: Reglan words! It was delayed gastric emptying, probably caused because her tummy had a bit of trauma from the surgical procedure when the mickey button was put in. She is eating like a pro again, and gaining weight. She's doing so good that we try life without the Reglan, and are super happy when she continues to eat well! She gains 3 pounds and is now up to a tiny but healthy 23 pounds (at 3 years 3 months old).

Current: Her HIV continues to be undetectable--a total non-issue as long as we give her the meds on time each day. She is still eating well, although she goes through periods where we give her the Reglan for several days, when she appears to be struggling to eat. We just learned that we now have a PID doctor in Tulsa again and have plans to visit him for the first time in October! We *love* our team at Arkansas Children's Hospital, but it would be so nice to just drive 10 minutes to the doctor! We'll visit Dr. Chang and see how it goes.

Boo-boos: What about bloody noses and scraped knees and busted lips? Yeah, we've had all of those. I couldn't tell you the dates though, because they were not big blips in our day. Technically you should always use universal precautions, and we CERTAINLY have the rule that no child may touch another child's blood--ever (even the healthy kids can carry yuckies in their blood). Still, when your kid comes up with a bloody nose you act like a mommy first. HIV is second. I don't go an run to get gloves. It doesn't even cross my mind anymore. I know the (minute) risk I'm taking, and am happy to live with that (minute) risk in order for my daughter to know that mommy is there for her. Blood happens. HIV is a wimpy virus. Nough said.

And that, my friends, is a year with HIV. We consider it to have been a great success, even though we had complications that most people don't have! Lots of kids have no issues taking medicines, and certainly the delayed gastric emptying is a rare thing, having to do with the g-tube rather than the HIV itself.


RACHEL 11:36 AM  
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RACHEL 11:41 AM  

LOVE this post! Just found your blog (again)! Thank you for posting.

Heather A. 12:03 PM  

Awesome update!

Bonky's Mom 4:16 PM  

Wonderful update! I love that your education about HIV helps people understand that the stereotypes are so. not. true.

Several years ago, I met a mama of an adopted, HIV positive kiddo and although I am no expert still, I learned a lot about how 'do-able' the virus is. thrilled for precious Kendi and you guys!

Ericka 5:29 AM  

What a great post!

Cora 11:15 AM  

wow that is a great post. Thanks for sharing and giving us a snapshot of HIV care.

Mama D.'s Dozen 11:29 PM  

Just got back from a 9,000 miles Road Trip, and am excited to be catching up on my favorite blogs.

THANK YOU for being so open and honest about Kendi's HIV status. She is BLESSED to have a Mama that is "mama first" ... "HIV second".

You are an inspiration!

Laurel :)