I often get asked how sad or difficult it is for me to be here with such limited resources, inadequate and backwards knowledge from the very small medical system in place in the country, and with such little power to do anything about it. And my answer is that God called me here, equipped me, prepared me, and sent me. I've been given a peace about it. I don't get frustrated or annoyed. I mean there are those moments, but few and far between and they are very fleeting. I usually very quickly remember that the care we are giving them here, in our center, is far better than they would have ever received if they were living in the community. And if I can care for my corner, improve my corner, and educate all the medical staff and tias I work with, than we're making progress. A small corner is progressing. You can't change the world, but you can affect change in one person, one community, one city, one small corner, that can ripple into a tidal wave on the other side of the world. That's the affect I'm going for. I'm satisfied in that. I can see the difference God is doing here. I see the positive changes and the changed lives.....the life!
Tonight I'm frustrated. Very agitated and frustrated and...well, I don't have words for it. I'm at the tears point, but I know it will do no good. So I'm praying. HARD! Most of you have been reading about Addie and her situation. Tonight is night 13 that she's been in the hospital. She went in with high fevers every day, despite 2 rounds of oral antibiotics (the most powerful we could give orally), 2 enlarged lymph nodes (that we suspected were tuberculosis), enlarged organs-spleen & liver (from HIV and possible TB), HIV + test, a low hematocrit (from the infection) and oral thrush that would only respond to nystatin and then come back with vengeance (probably cause it's all over her body and not just in her mouth). The HIV clinic that helps us with our HIV + kids felt like we needed all the tests done at one time in one place and to start treatment immediately. I agreed and was getting slightly annoyed at the fact that we were still waiting to treat a very small 3 month (newborn size & weight). So we went. I was already torn, as I know what can happen in the hospital and that it's not necessarily the best place for her. Plus once she's there, she's there, and there's nothing we can do about it till they decide she's ready to come home.
Her condition has been worsening and they are not doing anything to treat her. They did manage (1 gold star for them) to get rid of her thrush because they stuck a tube down her and didn't allow anything to be put in her mouth. I'm sure by tomorrow it will be back since she's taking bottles and pacifiers again. I actually would bet on it. A lot of money. Here's the list of symptoms she's acquired from being in that very clean and sanitary hospital (sarcasm dripping): diarrhea that won't stop, sores on her head, then a cough, now vomiting with every bottle. Are they treating her for TB? NO. Are they giving her ARV's for HIV? NO. Are they treating her probable systemic fungal infection?? NO. Is she getting even a multivitamin with iron to help her low hematocrit?? NO. Is she getting IV fluids? HA! NO. I feel as if they've thrown their hands in the air because they see this very fragile 3 month old that's losing weight, has tons of different symptoms and problems and is HIV + and just sentenced her to death. Well, she's going to die anyway, kinda thing! I feel like they are just waiting for her to die. She WILL die in there if they don't treat her.
Believe me, as a nurse, I have helped countless families come to the decision and have peace about removing life support from their infant. I've watched and helped families get through setting in motion a DNR order or simply a let's not do further treatment kinda order. I've been with families and the baby as they took their final breaths and relished the final moments they had together this side of heaven. I've removed life support from a newborn and rocked the baby into the arms of Jesus because the family didn't have the strength to do it themselves. I know when it's time to love them into heaven and when you shouldn't give up the fight. I do NOT believe it's Addie's time. I do NOT believe it's time to give up the fight. They haven't even TRIED to treat her first; haven't given it a chance.
We have our hands tied because if we forcibly (and that's what it would be) remove her from the hospital and take her home, and then she gets much much worse and we need help again (like for an IV as we aren't licensed to do this), we cannot just show up and ask for them to readmit her. If we took her home, it would be like us saying, we understand you can't do anything more for her, we are taking her home to die. Now, they CANNOT stop us from treating her, but we can't go back and ask them to help us out because we've agreed it's just palliative care. At this point, with her having diarrhea and vomiting, she will probably get dehydrated and one point and need an IV. We can't do that here.
If you haven't already been praying for Addie, please start. She's 3 months old and 7 lbs. She's lost her mother already, but she has a father, 2 brothers, and a sister that love her. Please pray for the hospital staff and doctors as they are caring for her. That they would get wisdom on how to treat her. That they would believe in her and treat her aggressively. Pray for the tia staying with her that is doing all her care around the clock. Pray for her family, that are scared they are going to lose a second member in less than 2 months to HIV. Pray that she would get better, that she would grow stronger, that she would fight, that she would be healed! If her vomitting and diarrhea get better we could consider taking her home and starting her on ARV's and TB treatment ourselves. One of the doctors without borders staff is going to try to go to the hospital on wednesday and use her hopefully leverage to get somewhere with Addie's care. Please pray this works!!! Please pray for Addie!!! We want her healthy and home.
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