AliRae

Not sure if anyone's still reading this thread, but hi from the Africa Mercy, currently docked in Pointe Noire, Congo! :) I've worked with Mercy Ships for nearly 6 years now, so I can answer any questions you might have. :)

I am indeed on the Africa Mercy! Well, not right now ... I'm home for a quick vacation, but I'm headed back soon. Have you been? Or are you coming? =)

Just as a disclaimer right at the start here: I live on a ship in Africa, so the resources we deal with are WAY more primitive than what you've got. That being said, we cup feed a ton over here. Part of the reason is because we often don't have any bottles (they get stolen when patients leave) and so our only option is medicine cups. However, we do run a small feeding program for our cleft lip / palate kiddos who need to gain weight before surgery. These babies are almost always cup fed, since somehting like a Haberman feeder is almost unheard of over here. (I think we had one, but, surprise, it got stolen!) For these little ones, we get the mamas to express what they can and then mix with fortified formula to whatever caloric density we're looking for. This often means a pretty thick final product, and especially the kids with palates just can't get a good enough suck to get that out of a nipple. As long as the kids are held pretty much upright and the milk is trickled in super-slowly, we're not seeing much, if any aspiration. As far as nipple confusion, the babes here don't seem to get it. If a mama goes into surgery and we have to feed the baby a few bottles, they never seem to be fussed by it or by the switching back. (Although, more often than not, one of the other lactating mamas on the ward will just end up breastfeeding the kid, so we don't do that much either!) (I'm reading back over this post and realizing all over again what a strange life I lead...)

Jersey? Jersey?! Can you just stop by and say hi to my family for me while you're that close?! ;-)

Just as an update - the little one who got intubated on Saturday went back to Jesus this morning. His kidneys shut down overnight, and he was in full-blown ARDS, and when the dad came in to visit this morning, he and the mama asked that the machines just be turned off. We disconnected all his drips and turned down his FiO2 and snuggled him in his daddy's arms with his mama holding onto his feet and in a matter of minutes he'd slipped away. It was such a good death, the kind we rarely get to see in the ICU. It was just the family and me and the doctor who didn't try to hold on for too long but believed us when we said we thought it was time. And he went quietly, surrounded by the love he never really got to know while he was alive. And then, after all the nurses came to say goodbye they went out too, their poor dead baby on the mama's back, to try and find a car to take them home without charging them more money than they had. My poor heart can't take much more of this.

For once I'm posting an obscure question from the coast of West Africa. Today, I just need a hug. I was in charge, and one of our feeding program babies (not the one I posted about earlier with the high alk-phos - this is the one who was plumping up perfectly) hasn't been doing well for the past few days. He's had high fevers, a full body rash (kind of like a mild Steven's Johnson) and increasing work of breathing. Anesthesia (the ones calling the shots on his case) has been sitting on intubating him, since his CXRs have been mostly good - just some peribronchial stuff. Anyway, when I went in today he just looked bad, you know? I called the on-call, who came down and was totally useless, so I ended up calling in another guy, one who just got off the plane last night. (I had met him at breakfast, he seemed smart, and he said he did peds!) Thankfully he came right down and took over running the show. Listened to me when I said we needed a tube, and finally got the kiddo intubated. By the time all that rigamarole was done, his tiny reserve was GONE, and he satted anywhere for 50-70% on 100%FiO2 for several hours. In the midst of all this, while I was still trying to round on the wards and answer questions from all the new nurses working there, I got a call from the gnagway. "Hi, we have a dead baby." I ran up, and sure enough - a little 3-month old girl who was going to be admitted for surgery on her cleft lip TOMORROW was in her mama's arms, ale and starting to cool down. I ran her downstairs and admittedly lost my cool for just a second while I plopped her on the next open ICU bed (the one next to the intubated kid) and demanded "a stethoscope - RIGHT NOW." Long story short, she was long gone, but we coded her for a couple minutes for the sake of the mama, who probably didn't understand what was going on anyway. It's the first time I've ever used a clipboard as a backboard. It's also the first time I've called a death, cleaned up the baby and handed her to the mama only to have the mama look at me like she actually expected her little one to be breathing still. I held her while her mama tried to call her husband. They live way up north, maybe 10 hours by taxi, and she was going to have to go alone. With her dead baby strapped to her back, pretending that she was alive since she wouldn't be able to afford the jacked-up taxi fare that would be charged her if the driver realized he was trasporting a body. So I held her and I rocked back and forth, because really can we ever stop rocking them? And then I walked them out into the heat and I gave them some water and some transport money and the mama told me "Merci." I held the baby on her back while she knotted cloth across her chest and then she walked away, a tiny bundle in a pink hat on her back. I really just need a hug.

Hm .... good point. Interestingly enough, we just had a patient who was discharged following a course of treatment for mucocutaneous leishmaniasis! First I had ever heard of it .... Baby is afebrile and negative for malaria on a smear. I'm figuring it's not trypanosoma, since she's completely symptom-free clinically with no swollen nodes. And most of the flukes come about my swimming in infested waters or eating infested foods, neither of which my little darling has quite gotten to yet in her development. =) I love the thinking though ... now that you've got me on this path of thought, the malaria does seem like the most likely parasitic cause, but we just routinely test for that if there's anyhting else going on, so we had already ruled it out. She's too young to have built up SUCH a massive amount of parasite, too, since a good portion of her life has been spent as an inpatient in our feeding center, which is a relatively well climate-controlled environment. It's a tricky one...

Okay, my newest what-on-earth-is-going-on-here from the ship in West Africa ... We have a little cleft lip / palate baby who was admitted through our feeding program. She's 4.5 months old, and she was admitted almost 3 weeks ago at 3.24 kg. She's now 3.33 kg, despite lots and lots of feedings. The other day, a new doc was examining her, probably a little more thoroughly than she's been examined in the past (since we don't do much in the way of workups when a skinny baby has an OBVIOUS reason for not gaining weight like a lip/palate) ... it turns out she has a huge liver, so we sent labs. Here's where it gets interesting ... Babe has an alk phos of 2228. Her ALT and AST are up too, somewhere in the 50-80 range (I cant remember exactly) and get GGT is normal. Lab was trying to run a calcium on the tiny little sample we gave them when I left, so I'm not sure what it is. Mama is negative for HepB/C and HIV, but we didn't test baby because we didn't want to take that much blood if we didn't have to. Other than Paget's disease, which would be kind of unlikely in such a small one, and we're not seeing any bone deformities, we're kind of stumped. Anyone?

A lot of what Jan mentioned is similar to what we did at my old hospital, except we actually didn't have as much stuff! I love the idea of soft jammies and blankies for the little ones. We always did hand and foot prints, and if it was a kid we were planning a withdrawl on, I would always ask the family if they wanted to be a part of that with me beforehand. That way they have the memory from when their kiddo was still alive. (One of the most poignant moments I remember was two little boys, 7 and 9, painting their 16 year old sister's hands to make prints before we extubated. They were so earnest and sweet, wanting to make sure it was perfect. "We're making this for mama because she's sad.") We also had the twice annual memorial service, where families could gather and we would have readings and stuff. There was always a project for the parents to do, something like painting stars with their child's name, and we would have a wall for parents to bring photos to post up a big collage. The nurses often end up doing readings and stuff in the service, which is pretty cool. Here on the ship where I work, we don't have anything in place because it doesn't hapen too often, and each time the family is totally different. The culture here isn't the same as in North America, so things like giving a mama a blanket to remember her baby don't end up working as a memento; it just gets sold to buy their next meal. But we do those things nonetheless - soft clothes and blankets, usually donated from people back at the home churches of other volunteers here. Just this week, actually, we had a pregnant crew member miscarry in her 12th week. They're European, so VERY far from home at an incredibly difficult time. So I pulled together all I could remember from things I'd read on old bereavement threads on here (yay allnurses!) and put together a little "treasure box" for the parents. I included a couple poems, one of which is one I spoke at our memorial service back home one year, that I had put on cute backgrounds in Photoshop and printed out. Thankfully, I was with her at her last ultrasound, so I had taken some photos of the screen (we can't print here) so I printed those out for them and included them. I marked a tape measure at the size of the babe (4cm!) and found a little stuffed animal. They didn't know the sex, but they felt she was a girl, and had named her. I made a little bracelet with her name and put it all together for them. They wanted to bury something to get some closure, so I printed out another ultrasound photo and made a second bracelet with her name and tied it with a little ribbon. I wanted to do more, but that's all I could scrounge up around the ship.

It was mostly refraining from talking to the kids in front of their parents. If the parents were holding out hope in the face of properly-done brain death criteria and a signed death certificate, my talking to their kid was only going to confuse them. Those parents tended to get more agitated if I spent much time out of the room, in case I "missed" something or failed to do something for their kid that would help them get better. I would spend extra time IN the rooms, but would try to make a point of sitting down to talk to the parents, giving at least the unconscious impression that my work was finished (if that makes sense). But like I said, for a family like mine, who had a grasp on the finality of the situation, I always talk. And I'll do pretty much anything that makes the family feel better. I've held hands with the priest and said prayers, I've shaved a baby's head, I've made pink and purple hand prints of a 16 year-old girl because her mama wanted them. The biggest thing is education. I find that most people have no idea what death is going to look like, especially death after withdrawl on a brain dead kid. They often expect gasping and moaning, and the eerie stillness after that tube is pulled can be really scary for them. I always make sure I explain that they won't breathe, but that it could take some time for the heart to stop. And then we decide together how long they want to stay. I had one daddy decide that he wanted to be the one to know first, and he didn't want me telling him. So when we pulled the tube, he curled up next to his daughter, his head on her chest, not moving a muscle. Ten minutes later, he finally lifted his head to tell me that she was gone, that he couldn't hear anything anymore. I saw him later that year at our memorial service, and he told me that being able to do that let him feel like he had some tiny measure of control when his life was spinning out of his grasp. I've been out of the PICU world for almost 2 years now, working on a hospital ship in West Africa, and I really do miss it sometimes.

Almost 11 years ago now, my cousin (17 at the time, and he might as well have been my brother) was admitted to the CCU at Sick Kids in Toronto after a near drowning. It was one of those freak accidents; he was under no more than 5 minutes, but he was completely brain dead as a result. My aunt and uncle were in France at the time, and the rest of our family is spread around the States and Canada, so it took a day or so for everyone to get there - my family was one of the first to arrive. The way his nurses treated him is a huge part of the reason that I became a PICU nurse after graduating. I ended up unofficially being the "death and dying" nurse in our PICU, and I dealt with many brain dead children in just 2 years. I know exactly how much work and technology goes into sustaining those kiddos until support is withdrawn, especially if they're going to donate. Sometimes it feels like there's nowhere to turn around in their rooms. But I remember Johnny's room so clearly. The nurse had all the pumps and wires tucked away behind his bed. The curtains were open to let in the sunshine, and she moved quietly around his bed, putting lotion on his hands and vaseline on his lips, chatting to him. "It's a beautiful day, Johnny. Your cousin is here to see you. She wants to say goodbye. Everyone's here to say goodbye." I knew that he was dead. We all did, and his nurse, even though she talked to him, reinforced that by "telling" him that we were there to say goodbye. Every single time I take care of a brain dead or otherwise dying patient, I think of her. And I always talk, as long as it's a family that understands what's going on, that brain dead is dead. As others have said before, if it's a family who isn't getting it or can't let go of their hope, I'll tailor my interactions to whatever is going to make the experience easiest for them. I think that only happened once; every other time, I've been part of withdrawls on brain dead kids who I've spent the day talking to, singing lullabyes to, and praying over if the family wants me to. I've spent the last 11 years wishing I knew who that nurse was that took care of my cousin and wishing I could thank her for what she did for me and for my family by talking to my cousin. "It's a beautiful day, Johnny."

I just have to share a story from my shift the other day. As background, I live and work on a charity hospital ship off the coast of West Africa. Two evenings ago, I was precepting a new nurse, and we were faced with quite the education puzzle... One of our patients was a little old lady who just had surgery to repair an obstetric fistula. The card above her bed proclaimed her age to be thirty-five, but the lines on her face told a different story. I had to teach her how to train her bladder, to learn to control the urine that's been flowing freely for so many years. The instructions are actually fairly simple. For the first thirty days, go to the bathroom every hour. Increase that time by half an hour over the next two months, fifteen days at a time, until you can hold your urine for three hours. We had a chart printed out, with different coloured blocks and everything. But this particular old lady has no concept of time. When we say measure your time in hours, we might as well be telling her to perform backflips and cartwheels. She was born in a small house in a village way up country, and that birth was never registered so she never went to school. She's spent her life ruled by the rhythm of the sunrise and sunset, pounding cassava and washing clothes in the river. How on earth were we supposed to teach her? Through two translators, from English to French to Yoruba and back again, we had the following conversation. Each box on this paper is one day. Here is a pencil; each time she sleeps, she should mark one box. So, she should mark each time she goes pepe? No, each time she sleeps. One mark for one sleep. Is there anyone in the village who has a watch? Yes, she thinks there is one man who has a watch. Can he read? She's not sure. Can anyone read in her village? She thinks there is someone who can read. Okay, these directions are in English. We will translate them to French. She should have the person who can read and the person with the watch help her. There are directions for when to increase the time. See? The boxes are different colors. She doesn't understand. The person who can read will have to explain it to her. She won't remember. All she needs to do is make one mark every time she sleeps. The man with the watch and the man who can read will tell her the rest. The rest of the shift involved teaching another completely illiterate woman how to manage G-Tube feedings for her baby when they're eventually discharged home to their village. I love my life over here.

I was thinking about that the other day, but we don't have any on the ship right now, and they're not something you can get on the streets around here. Mangoes, yes. Haberman feeders? Not so much. Want to send me one? =) I got into a bit of an argument with the doc writing orders on her today ... he's a general surgeon, and tried to convince me that, for a 5 month old baby who has been aspirating, PO feeding pedialyte would be more appropriate than thickening some breastmilk with rice cereal and trying that. His rationale? "At 5 months, kids shouldn't be getting aynthing but breast milk." I might not have kids of my own, but that seems odd to me ... does anyone know any contraindications to feeding rice cereal to a 5 month old?! He also tried to tell me that we had been overfeeding her. I managed not to laugh while I showed him the numbers: on our former plan, she was gaining an average of 30g a day. On his plan, after getting her GT, shes lost 100g every day for the last 3. Alas, I'm not in charge for the rest of the week, so it's anyone's guess as to what orders are going to slip through.

Unfortunately not. But just by the sound of it, she was more than microaspirating. I figure she's always had a really poor suck, even with the tumor there to support her jaw, because she's about to turn 5 months old, and we've FINALLY gotten her weight over a whopping 3 kilos! I've been off the last couple days, but I'm headed down to be in charge for the weekend, so I'll see how she's doing!

I worked PICU back when I was practicing in the States, and I also seemed to have fallen into that role by the time I left. My first loss was, thankfully, nothing like yours, and I think that's what allowed me to go on and do it so many times after that. He was ten years old, and had been neurologically devastated since about a year of age. They had withdrawn support the night before, and I was surprised that he was still there to be assigned to me in the morning. I walked into the room, and his mama looked up at me from her place in the chair. "You're here. He was waiting for you." As soon as she had said that, his heart rate dropped and he died. Just like that. There was one other death that I was a part of that I will absolutely never forget. She was 16, her nails were perfectly manicured, and her mother, through her sobs, explained that she had just had them done the night of the party. The party where the brain cancer we all though she had beaten reared its ugly head, and she started to seize in front of all her friends. I sat with her parents and her two little brothers all day. At her mama's request, I stood in the circle of family while the priest who baptized her prayed over her. When her mother pulled me out of the room and begged me to explain to the boys what was going to happen to their sister, I agreed to talk to them. "You've done that before, right? You know what to say?" I lied and told her I had, that I did, and then I went back into the room and somehow managed to tell them that sister wasn't going to come home this time. When we pulled the tube, the doctors and RT's left quickly, and I stayed by her bedside, next to the darkened monitor, holding her mother's hand. Her father laid his head on her chest, and stayed there, motionless for what seemed like forever. Finally he lifted his head, panic in his eyes. "I can't hear anything." I took my stethoscope and confirmed what I knew had probably happened long before. "She's gone." When the parents left the room, a tech and I bathed her, washed and combed her hair, scrubbed the sticky residue of the pulse-ox off her perfect nails. We took out lines and clothed her in a clean gown. Even though she was 16, I made hand and footprints, one each in her favourite colours: pink and purple. When we were finished, I found her parents in the waiting room. Her mama was curled in a tight ball, refusing to come see her baby, because she didn't want to see her "like that" anymore. I explained that the tubes were gone. The wires were gone. The machines were gone. She just looked like she was sleeping. We went back together, and then I left them all there to say good-bye. On their way out the door, the mother grabbed my arm. "You won't let her be alone, will you? You'll stay with her?" It was already after seven, but I promised. I clocked out, paged transport and sat by her bedside. When they came, I walked with her down to the morgue and made sure she was 'tucked in' before I left. I've helped to midwife many souls from their bodies since then, but that day stays with me.

Well, she kept on not gaining weight and sounding worse and worse lung-wise after every feed. Also, I had a long chat with her mama (through a couple interpreters) and it turns out that mama has a 4 and 7-year old at home, and she really does need to get back there. Baby got a g-tube yesterday, mama is going to learn and they're going to head home and come back every few weeks for weight checks. (They live in a village pretty far away). I think it's going to be the best thing for her, especially since we're heading out of rainy season, and she actually has a chance of staying infection free at home! Thanks so much for your replies though! At the very least, you confirmed for me that we weren't doing anything wrong that was hindering her from succeeding. She just needs way more time for her anatomy to strengthen, and the NG in her little flattened nose wasn't helping anthing.

I was taking care of a little boy with hypospadius following his repair. A couple of days after his catheter was removed, I asked his mama how he was doing. She smiled widely and proclaimed: "The pee-pee is coming from the end of his man-hole!" I about died laughing.

Hi all! I'm currently working as a pediatric nurse on board a charity hospital ship in West Africa. We've currently got a little baby who had a massive teratoma removed from her left jaw (adherent to the mandible and carotid, but fully dissected). I think the tumor weighed around 700g, leaving us with a weight for her of around 2.75kg (weighed on a produce scale from the galley because we don't have a baby scale at the moment!) The anatomy of her mouth is quite deformed - her tongue is curled and the side of her jaw is weak, so she's really pokey at bottle feeding, and tends to aspirate quite a bit. We're trying to get her on a feeding schedule that will allow her to be discharged home without the NG tube she currently relies on, but we can't seem to get her to gain any weight. We also don't have a pediatrician at the moment, so we're kind of making things up as we go along. Currently, shes on Q3 feeds of fortified EBM, 50 mL per feed during the day, 70 mL at NOC. We bottle every other and rest her on the off feeds. Mama doesn't have the best milk supply, and baby wasn't getting enough from the breast and was just getting exhausted trying, so we stopped that. The question: Is this an appropriate plan for her to gain weight? Is there anything we can be doing to help her coordination? Help!

Aw shucks Jan, thanks! =) It's been forever since I've logged on to this site, and I must say, I've missed it! I'm back on the ship, stationed this year in Benin, a skinny little country between Togo and Nigeria. We're doing tons of pediatric surgeries at the moment, so I'm loving it. The wedding and honeymoon were awesome, but then hubby and I had to be apart for 3 more weeks while he did a training course. He just got back on Monday, so it's like a honeymoon all over again! I've just been asked to step into a position as ICU coordinator here on the ship, so I'm sure I'll be posting more as the days go by and I'm more directly involved with ALL the ICU stuff going on! I'm back to blogging about all my experiences, so PM me if you'd like the address!

When I started reading the question, I thought "sure we do!" and then I kept reading and realized that you were talking about the actually sick ones. Absolutely not. No one in my former PICU thinks that the really sick ones need to go outside. I had a Duchenne's kid who progressed to being trached and vented who got really sick and septic and was in the hospital forever. Once he was better and up in his chair and getting ready to go home, I used to take him out on the balcony for fresh air occasionaly on the weekends. But not, for crying out loud, while he was sick! I just found out that the little PD baby I mentioned earlier went home after 14 months on the unit. I don't think he left his room the entire time.

Amen, sister. I just talked to my old extern, now turned fabulous new grad nurse. She informed me that a kid I primaried last summer (renal agenesis, PD) is still on the unit. He's fourteen months old. Holy cow.

I want to work at kessadawn's hospital! To add: our unit has 14 of the beds arranged in a U around back-to-back central nurse's stations. The other 6 beds are in a back offshoot that's not terribly well-stocked and it's scary back there. When we did hearts, they would often go back there because it was next to the cath lab. it scared us all to death because, as we used to say "no one hears you scream." All private rooms with sliding glass doors and a central monitoring system. We have a unit secretary. usually. Docs enter all orders on computer and we're not allowed to take verbal orders, which helped. It's a locked unit, so when there's no secretary, the RNs closest to the front desk spend their entire shift ringing people in and out of the unit. Which isn't cool, because hte really sick kids usually get placed in the front rooms there. Our patients sometimes got moved around to make pairs possible. The best was opening and then closing the back unit (those extra 6 beds) in one day. I must say, though, I do a great deal more shuffling patients around here on the ship. Just the other week I got handed a list of pretty much all the patients with new bed numbers and just had to move everyone around because they wanted to close a ward for the weekend. Oh well. It's not so hard when the beds are 2 feet away from each other...

As far as I can remember ... 1. I'm not sure if our cardiac program exists anymore. It was just a baby, anyway, when I left. We do CRRT but not ECMO. We do some transplants- mainly kidney, but I've seen a liver or two. Neurosurgery with all that entails. We're a level I trauma centre. We do transports, picking up from around 20 local hospitals as far away as an hour and a half, give or take. The charge nurse is also the transport nurse, which leads us into huge problems often, when you need to get out on a transport and there's no one who can take charge report. 2. 20 beds. Ratio is usually 1:1 for vented kids (unless they're stable trachs or a paralyzed kid paired with a nothing kid). 2:1 for CRRT with one nurse manning the pump. 1:1 with hourly PD kids, when at all possible. Otherwise 1:2 or 1:3 if at least one of those are floor overflow and your other 2 aren't too heavy. 3. we have PCTs who assist with hands-on care. They help bathing, turning, feeding etc. With less sick kiddos, they'll do baths independently. Huge help, but usually only one for 20 beds, so you often end up doing total care anyway. Housekeeping stocks our supply carts in the rooms, but not at night, so you end up running around a lot then. 4. What's a break? I used to routinely work a 12-hour shift with maybe 20 minutes for lunch. My record is 17.5 hours without peeing. If the charge nurse isn't out on transport (see where that gets tricky?!) she goes around and covers breaks. This just about covers lunch usually, since charge goes on rounds, too and that can go on forever. If you want any other break, you have to beg borrow and steal another nurse. I didn't realize how much I needed breaks until I got here and starting getting them. I'll never be able to work in a place again where I can't sit down in the middle of a shift! 5. continuing ed is usually inservices during work hours that no one could go to anyway. Not terribly helpful. But we did have a wonderful educator who was great at making sure we were all up to speed on new equipment and policies. Once she'd trained a couple of us, she would often recruit us to pass on the info, which worked when she was overtaxed. But courses for credits were rarely available. 6. Yes to new grads. I was one. 6 months orientation with a primary preceptor. 10 weeks of classroom (8 hours of class one day a week) during that time to put theory behind what you're doing on the floor. Our preceptors were amazing at picking appropriate assignments and getting a god pregression from stable to sick; I felt totally ready (as ready as you can be) once I started on my own. 7. We discharge home often. Kids stay who aren't really sick enough to be in the PICU, which gets my goat. We often used to have peds overflow kids when the floor was full. Generally though, not a huge problem to get them to the floor. Oru children's hospital was a seperate building off a main grown-up hospital, and we all suck pretty close together and tried not to shaft each other too badly. =) 8. I left in the middle of a mass exodus. Management wasn't great, and there was a lot of dissatisfaction. No breaks, no feeling that we meant anything, poor MD/RN relations. In the less than 2 years I was there, I was more than halfway up the seniority ladder! I'm out of here ... off to play with monkeys! I'm never coming back to north america...

Couldn't save this one. =( My little man went to be with Jesus earlier this evening. He's had a bad aspiration pneumonia for the past few days and just after dinner tonight, decided he'd had enough. In the thirty seconds it took me to put on a fresh pulse ox when his stopped picking up, he had flown. Must say, driving through the rainy Liberian night with a child in my arms to deliver him and his mother to her family is NOT an experience I ever imagined I'd have. Thanks for all your help and suggestions with this kiddo!

Duh ... that would make sense! Thanks! And it sure would be a great option. Just getting it to Liberia while the kid's still here is going to be the trick...