Monday, December 7, 2009

Dec 1st - A big day for Lutsandvo Lwa Krestu

Tuesday, December 1st was a big day for our Lutsandvo Lwa Krestu Project.  After many months of working towards our goal, we brought the kids from Lutfotja Methodist Primary school that are a part of this project, HIV+ and receiving monthly medication to the newly opened satellite Baylor-Bristol-Meyers Squibb Children's Clinical Center of Excellence in Manzini.  Let me explain what a milestone this is for our project and our kids.

Baylor College of Medicine in Houston has a Children’s foundation in Swaziland which is an international non-profit non-governmental organization founded as a partnership between Baylor International Pediatric AIDS Initiative and the government of Swaziland.  In 2006 it opened the Baylor College of Medicine Bristol Myers-Squibb Children’s Clinical Centre of Excellence-Swaziland (COE) in Mbabane which is a state-of-the-art Pediatric AIDS facility that tests, treats and cares for children and their families that are HIV+.  It is very impressive but more importantly it provides the best care and treatment possible for those who attend their facility.  They also operate satellite clinics in two cities in Swaziland, one of which is at the RFM Hospital/Clinic in Manzini.  The clinic in Manzini was operating out of several of their existing rooms in the RFM’s pediatric clinic.  They did a phenomenal job, with the little space and resources they had in Manzini.  They were slated to open a new clinic on the grounds of the RFM in Manzini in February, 2009.  After funding and other delays, they finally opened the new clinic the last week of November, 2009.

Since August, 2008, we have been paying the transport costs for 7 children and their primary caregiver to go to various clinics to receive their monthly medication.  Most went to the Baylor clinic at RFM but some went to outlying rural clinics to receive their medication.  The care and treatment at these rural clinics is not at the same level as the care and treatment at Baylor.  Doctors are usually not present at the rural clinics, sometimes they run out of medication and we had one child who received the wrong dosage over 6 months ago and has been ill ever since.  Thoko and I started talking about trying to get all of our kids to Baylor in RFM in the fall of 2008.  Baylor asked for us to wait until their new satellite clinic opened in 2009 because of the space limitation.  Thoko and I wanted all of our kids at Baylor in RFM for many reasons.  One is that the care is superior and if the child is ill with an HIV opportunistic disease, they also treat that disease.  Another reason is that it would be easier for us to communicate and coordinate with Baylor, the school, the parents and our volunteers.  In addition, it would save us (Thoko, the other volunteers and I) a lot of time, worry and transport money for us to make sure the school and the parents have the money for transport before the child’s visit.  We also hope that this will unite the children and families so they can support each other in living positively with HIV.  Thoko was the main driver of this initiative.  She talked to the Baylor nurses several times and of course she was the one who talked to the parents explaining what was required to make this happen.  My role, as always, is to be supportive, assist when possible and play my white American trump card if needed which I rarely need to do.  In addition, it was easier for the Baylor (American) Dr. to communicate with me just as it was easier for the Baylor nurses (Swazi), the parents, and the school counselor/head teacher to communicate with Thoko.  As part of this move, we also added 7 more children to our program.

This sounds like it should be a simple thing, but just trying to keep up with all the kid’s appointments and then get their medical cards and talk to the parents took a lot of perseverance.  Luckily, all of the parents of children who attended rural clinics agreed to the transfer and really did a super job of getting the information needed.  And those parents whose kids were already at Baylor agreed to work with us and Baylor to have their children come on the same day.

Finally, we had everything set.  We picked Tuesday, 12/1 to be the day of our first visit.  We picked that day because it was the first week that the new satellite clinic was open and the last day we could do this before I left and everyone involved felt it would be best if I was present to assist as needed.  We also had the school counselor and the Lutfotja Methodist Church CCS that is our voice, arms and legs in the community when Thoko and I can’t be there to come with the children.  So we hired a kombi (van) to pick everyone up at 8:00 from Lutfotja and bring them to Manzini.  Of course the kombi didn’t leave at 8:00 so things didn’t go quite as quick as we had hoped.  But considering everything, things went really well.  It was good all four of us were there to assist.  It was a little confusing for awhile.  It was a good thing that I was there because I could explain things quicker and easier to the Baylor receptionists, nurses and Dr. and Thoko could communicate with the parents and kids easier.

The nurses, Dr. and I decided that the second Tuesday of each month would be “Methodist day” at Baylor.  We will be working together to get all of our kids on the same schedule and keep them there.  I also promised that we would make sure that the parent or guardian of each child comes each time so that we will have been communication regarding the child’s care.  Our plan is that the Lutfotja CCS would come with the children and then our committee would meet them at Baylor.  Eventually we hope to get women from St. Paul’s to bring lunch to the children before they go back home.

Another benefit to this arrangement is that since (Thoko, the volunteers and I) will meet them at Baylor on our day.  If a child is also sick and needs medication that is not available in the RFM pharmacy, we will be able to quickly go to a local pharmacy to purchase the medication and send it home with the child.

The day went really well.  The parents, school counselor and the Lutfotja CCS were so appreciative.  Baylor was pleased that we will be there to help with communication and follow-thru with the children and their families.  We really couldn’t have asked for a bigger success.  It wasn’t until the next morning that I realized that December 1st was World AIDS Day (even though I knew it) and that we had commemorated that day by improving the treatment these children that are HIV+ will get.  How awesome is that?  It is one of those moments when it does feel good to be able to do something that will really improve a child’s situation and hopefully their life.  Praise God.

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