On December 17th Caroline was brought to Amecet. She was brought by an organization, which works in the villages with families and children who are HIV+. Caro was HIV+, she was very malnourished, very weak and very unhappy. The situation in her family was also not really stable. They were looking for a place where she could get stronger and more stable in her health. In the past we had received more children in Amecet via this organization. Caro came to us after a week in a hospital. Caro was 13 years old and her weight was just over 22 kg.
To be in this age group and being HIV positive is very difficult. In the past, when we had regularly HIV+ children in our home, we have had several children in the age of 12-15 years old. Often they were already using the ARV medicines, which slow down the growth of the HIV virus. But they stopped taking the medicines, they lost hope and because of lack of encouragement and understanding, they denied their HIV status. Several children were brought to us and all what we tried and did, was in vain, they were too sick, we were too late and they died. And it is very hard and painful to see that happen...
I went with Caro to the HIV clinic in the Hospital. She brought some ARV medicines, but I knew that there was something very wrong with the medicines, the way she told us that she took them was not right. In the clinic they were very helpful and they change the medication in the right dose and the right combination. We also went to the Nutritional Ward for help and they were also very helpful.
We made a good programme for Caro, with the medicines and the special milk, but Caro didn't want to eat or drink.. We really tried and at the end we had to give her a NG tube. In the beginning it was very difficult, Caro begged us to take the NG tube out, but we could not, because the feeding was, next to the ARV medicines, the most important help she needed. Caro was not happy, we tried to cheer her up, gave her colour books, painted her nails, but I hardly saw her smile.
She got used to the NG tube, never removed it, but hardly ate anything. She was not easy to handle, but we knew that she was not feeling good, so even when she was angry and hostile at times, we kept on smiling and trying to reach out to her. But she didn't gain and got weaker and weaker.
Last night at around 1 am, it went wrong. The 2 staff who were doing the night duty, called the nurse. Our 2 nurses, Immaculate and Joanna, both came directly to help. Caro was breathing with difficulty and was not reacting well. She was vomiting and had diarrhoea. They cleaned her, checked her lungs and the saturation. That was not really very bad. They started IV fluids and stayed with her to monitor. In the morning, they asked the doctor from the clinic next door to come and see her. She was prescribed more IV medicines, and we continued the NG tube feeding. Her saturation (oxygen level in the blood) was monitored continuous. I had called the family and asked if they could come as soon as possible, and they were on their way from the village to Soroti. The heart rate and the saturation of Caro went up and down. Caro was put on the oxygen machine. We were very worried; we couldn't get contact with her anymore. She also needed to get blood transfusion, but it took time to organize that and to get the blood. The parents arrived, together with a staff member of the organization who had brought Caro to Amecet. We explained everything to them, they have been coming to visit her, so they were a bit prepared. The mother cried a lot, and we explained that Caro should be in the hospital, the parents discussed this but then decided that they wanted to take her home. We all knew that Caro was close to dying and that we could not do anything to really help or treat her. If this was the decision of the parents, we could not do anything. maybe it was better for Caro to be with her mother during the last moments of her life?? The blood for the transfusion was brought, but the mother refused it, she wanted to go home. We put a matrass in the car and Simon, together with Andrew, were going to bring the parents and Caro back to the village. The 2 nurses, Immaculate and Joanna went along. I am so touched by their commitment to Caro. They were busy with her since 1 am and now it was 3 pm and they were still going. There was a possibility that Caro would die while travelling back to the village, they wanted to be there for her.
At 5 pm I got a phone call from Simon, they just arrived at the home in the village and 5 minutes after their arrival, Caro passed away. Immaculate and Joanna were removing the NG tube and IV line and helped the family to make Caro ready for the burial. (which would be done probably tomorrow).
I have mixed feelings, I feel so sad for this girl who has suffered so much, I feel relieved that her suffering is over. I feel that we somehow failed, but I know that we have done what we could... We have shown love, care and patience to Caro, medically we have cared so much for her, our whole staff was committed to her and was never too tired of cleaning her up.
Caro has peace now and we pray for her family and for ourselves.
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What a sad story. May Caro rest in peace . Much strength to all the workers of Amecet. You did everything possible for Caro. God bless you
This is so beautiful. It's crazy when I was back at home. I somehow go
I somehow got used to this feeling. Now that I am away it starts to hit
Oh how sad on all levels 😢. But you all did all you could. I’ll pray for you all and the family.