He's back...

Nemias is back!!!  Yeah!  He came home from the hospital this afternoon a full 6 days after admission.  He had a UTI….go figure.  That was not on my top list of suspicions, I have to admit.  He is on antibiotics every 6 hours for the next 10 days, fever watch, has a repeat urine test, and then a fun follow up pediatrics consult (you know those are my favorite).  He’s just as smiley and unphased as ever.  I love toddlers. 

 

In other news….the new Mozambican nurse finally starts on Wednesday….prayers please as we start training her, in my language skills and patience (both for her benefit), and rest for me…it’s gonna be a long process till she’s on her feet and taking over responsibilities. 

Mozambique's got talent

We had a talent show for all the kids on the center last night. They really enjoyed it. All the dorms were represented except for the BH (cause they were sleeping of course). This was the preliminaries only. One group from each camarata is yet to be announced and will advance on to the finals where even the missionaries will perform something (suggestions please??) The kids were so creative. There was dancing, singing, and skits. I am currently in the process (at this very moment even) of uploading video snipits of most of the performances to my video site at www.vimeo.com/inHishands so look for them soon, plus I’ve already uploaded pictures from the event at http://www.emptyhandedbutalive.shutterfly.com/ I hope you enjoy them. We all had a blast.

Updates, updates

Dionisio

Well he’s officially back in the BH.  We let him go 24 hours (starting yesterday) to see how much he would take by mouth as a trial run and today we (he) pulled his tube….he started taking occasional bottles Sunday for the Tias (and only the tias…never from me, the other Erin, or Tracey), but not consistent or enough volume to pull the tube.  After Erin and I’s consensus and a strong talking to with the Tia’s we decided that he’s taking just barely enough to take everything by mouth.  We had to stress to them that he HAS to eat and eat a certain amount (I threatened them yesterday with the if he doesn’t eat enough when he’s scheduled to eat, you’ll just have to try again in 2 hours for the rest of the volume trick….I think it motivated them a little).  And last night for the first time in 3 weeks he stayed in the BH all night with the Tias feeding him by bottle only!  Hooray Dionisio!  He was VERY happy when I walked in to see him today (without any tape or ngt on his face)!  That’s more like it.  Now he still doesn’t want soup or papino, so we’re offering baby food-apples, and just getting him to take whatever he wants for the time being.  So we still have no answers but we are keeping him on reflux and allergy meds for the time being and will see how it goes.  We are still trying to get a consult with a GI specialist for a follow-up.  On the developmental front:  right as he was getting sick he learned how to roll from his stomach to his back  cause he detests being on his stomach (I’ve all but given up on getting him to roll the other way cause he hates his stomach…how do you convince him to roll to it??)  Also, in the last day or so I’ve gotten him to “sit” in the tripod position for about 4-5 seconds….it’s progress, but his arms are weak cause I can’t get him to lay on his stupid belly!  Anyway, he just made 8 months yesterday!!!!  One day, he’s going to sit up and then we’ll work on crawling….

 

Nemias

He’s still spiking fevers in the hospital as of yesterday afternoon and is really tired but doing well.  They just have him on IV amoxicillin and paracetamol (their version of Tylenol).  They said yesterday he will probably be there till at least Saturday.  We are not holding our breaths.  So, no real change, except I think his fevers aren’t quite as high as they were on Tuesday here.

Fumigation, fevers, and fervor.

Let’s just say that yesterday was CRAZY!  That’s not even a good enough word, but I don’t have a thesaurus at the moment and I’m tired. 

 

It’s summed up by 3 things:  2 hospital trips for 3 kids, fumigation, and fevers

 

The day started out with my alarm clock beeping at 5:30 am….yes, I said am for those that know me, you can prob. imagine the look on my face and the sound that came out of my mouth.  My favorite toddler Antonio, at 16 months, and I had an pre-op ENT consult at the hospital and were leaving at 6am with a driver and picking up a translator for me on the way  J  note here that I said “favorite”, cause he’s the best at pitching fits, being strong-willed, laughing, goofing off, being cute, and a terror all at the same time….as if I don’t cause  a big enough scene being the only white person in the room holding a paler skinned Mozambican baby….do the math….add in baby laying on the floor kicking and wailing unconsolably despite the cookies (which have now been thrown across the room, taken back out of his mouth, and/or smashed into me or the floor), juice, bottles, toys, ect…..let’s just say Antonio and waiting do not mix!  And with our fun socialized medical system….all you do is wait….and wait, and then wait a little more in a different spot, strain to hear if they are calling your name over screaming demon, wait a little more, ignore the stares and mean glares…..and then wait again.  Now, don’t read this wrong.  I love the tot….i just don’t love taking him to consults or any other small confined spaces.  So on to the consult……hooray for miracles….he was a complete angel and even toddled holding my hand for most of the time…he’s getting heavy and what with all the entertainment and bribes I had packed….i was thankful.  Finally it was our turn, and they wouldn’t let my interpreter in because they said the doctor spoke English and even verified….door shuts…no English….oh he can speak English…..I ask him politely to…..but no….he says we are in Mozambique (and by about 8:30 am I am really aware of that fact but annoyed all the same) and we will speak Portuguese…..we aren’t in a restaurant, the store, on a sidewalk…..it’s a pre-op surgery visit…..the kid is sick….speak to me in a language I fully understand!  The best part?  We screwed up….3 of us looked at the sheet prior to this blessed event:  we were supposed to have marked a consult and gone to see the anesthesiologist BEFORE marking and attending this one…..(insert annoyance here)…..so I took my xray (that I’m sure when I finally get to see the anesthesiologist will say that it is way too old…explanation soon….and to get another one, and come back later) and all my papers, kids, bags, and my English speaking self out of the room…..we made our way to mark the consult for the anesthesiologist, but since they love us at the ENT, they didn’t mark whether this is urgent, non-urgent, emergent, can do next century, ect….so we now have an appt in November….then we will mark another consult with ENT at which time I’m sure we’ll be told that he has another ear infection and he can’t have the surgery (by the way…..out of 10 days, he has an infection about 8 of them) and then we’ll have to wait some more…..at which time….he will be deaf and it will be a mute (yes, I spelled it that way on purpose) point!

 

I arrive back at the center a little after 10, annoyed and tired….and sit outside in the hot sand, hot air, and hot sun with the tots, as fumigation of the entire center has begun and we have nowhere to go and I can’t breathe.  Sand is now on my legs, feet, entire outfit, down my shirt and in my hair…toddlers love playing with sand…..then I check on Nemias (2 years) who has had a fever since yesterday and is HIV positive….there’s been a viral fever thing going around the BH for the last few weeks, so I check in on him.  Despite the negative malaria test, we’re being cautious and starting him on meds as his fever is awfully high.  I get there and the clinic nurse (cause Erin is at GATV with some of the HIV positive kids and I was gone with Antonio and Jannie is off getting married in Denmark-the country) has given him paracetamol (their version of Tylenol) and ibuprofen at the same time and his fever is still 39 degrees…to the cool bath we go…..10 min later, I convince him playing in bath water is fun and better than crying…..fever down…will check in another hour and keep alternating ibuprofen and paracetamol every 3 hours (which he has had since yesterday afternoon).  I return, fever back up but just over 38 degrees, this time we remove all clothes and put him in front of a fan (ps…he’s in the clinic which ISN’T being fumigated and lots cooler at this moment)….and hour later, down just a few tenths of a degree, more meds….next thing I know another infant has a fever (he got immunizations the day before and apparently doesn’t like them) and so to the clinic we go with the 2^nd child.  Now I get to go back into the BH and clean EVERYTHING cause it’s all fumigation-poisionous.  In the midst of all the chaos and madness its somehow it’s 3pm and Nemias’s fever is 39.6 and he’s just received meds 2hrs earlier that aren’t working-he’s shivering and chattering teeth so back in the tub we go this time…no amount of convincing will work cause he’s too uncomfortable and burning up…..cold juice, screaming…15 min later, his fever is up higher than when we got in the tub, pull him out….our clinic md is there, we grab her, she gives us the ok to give him even more antipyrectic meds…this time by a faster acting suppository and now it’s close to time for ibuprofen.  I give it to him for extra measure, and go to call Tracey and the other nurse Erin and say we’re going to the hospital cause his temp is now 39.9 degrees and I’m afraid he’s septic despite that fact that he’s been playing and eating well and barely has a runny nose, but you can’t take a chance with the HIV kids and his temperature is just not responding to medications.  I run into Tracey on the other side of the clinic with our 4 year old who is cold, clammy, diaphoretic, pale, shaking, and refuses to talk or follow directions…the Tias have carried her here and think she’s eaten something….great…she looks shockey to me…let’s just take them both…..good now she’s vomiting too.  By 5p we are in the fake ambulance with way too many people, a cold towel wrapped around naked Nemias, too much stuff, and on our way.  Lots of angry cries and tests later….Martinha is back to herself…well almost and they say it just might have been a weird allergic reaction to the fumigation chemicals.  Nemias has been admitted for an infection (the md swears is his throat, which I find slightly odd, considering the amount of food and drink he’s been consuming all day, but don’t care, cause he’s getting IV antibiotics and now I don’t have to check in on him every hour)….It’s now 8p.

 

I have eaten only 2 power bars since 8am and we have to wait for another Tia to come from the base with Nemias’s HIV meds, cause the hospital doesn’t have and won’t give him any while he’s there…..So we go across the street and eat KFC (yes, like in the states, except they only have giant potato fries and no veggies).  By 8:45 we’re back at the hospital to meet the tia and bring food to Nemias and the tia staying with him (remember they don’t feed you there….)  We arrive at the center at 9:30pm.  My light in my room has gone on the fritz on Friday evening (maintenance doesn’t work except emergiencies for the wkends and yesterday was just as crazy) and so I borrow a lamp from another missionary….My room is poison to me….so I now have to mop, clean, bleach, ect everything so that I can live in my newly fumigated room….I can hardly breathe since I couldn’t air it out like I would have wanted…..I take some Benadryl cause I know my immune system is going to hate me in the morning for this and crash into bed at 11:30…..

 

Today is a new day and I had to give meds at 7:30 am so I woke up at 7a…..Dioniso is still not eating much….I promise update to come soon…..and other infants have fever and diarrhea….think I can sneak a nap or two today??  I’m thanking God for my blessings, for wisdom, patience, energy, and renewed mercy!  I would also love some rest….I’m working all this weekend and probably taking Dionisio for the night!

Forever Home

Guess who has a forever home???

ELIANA!! Yeah. She has been with us since she was 3 weeks old and now she'll be 9 months on Oct. 5th. She was abandoned with a neighbor and we have never found any family. She is adorable and quite healthy. She has absolutely NEVER been sick, which in the baby house is quite an accomplishment. She even survived March and April unscathed when all the kids where getting deathly ill with GI bugs and malaria. We believe God has big plans for this little girl. She has quite the personality, is slightly demanding, and very strong willed. She’s about to start crawling any day now and eats like a champ! (She loves food..any kind). She has the biggest smile and love to play!

Her adoptive mom, Amelia, is a receptionist here at Iris for us on this base and she fell in love with her immediately. It has taken quite some time for the courts to agree as she is a single mom and didn’t have a house (she was living with her mother and father and has a 3 or 4 year old boy of her own). It’s quite easy for a married Mozambican couple with a house and a steady income, but not for any one else. Amelia comes and visits almost once a day to check in on her and has been taking her home for weekends at least once a month for the past few months. Eliana really likes her. Anyway, we are all REALLY EXCITED that Eliana is being adopted (cause this practically never happens to our kids as there is usually some family that just simply doesn't want to or can't take care of them, but doesn't want anyone else to either)! She left today to go live with Amelia and we hope for many visits in the future. Amelia will have her for a 6 month trail basis where the courts will visit her at least once and check in on her. If everything’s good then it will be official! Prayers for the new family.

Also we have another little boy that is 3 that has a family trying to go through the process of adopting him as well…no specifics until it’s final, but be praying that his forever family goes through as well…he’s a special little boy and they are a great family!

NEW kid deserves a NEW prayer request

***UPDATE: 9/22/08 Julio is laughing and smiling and interacting alot more with the other kids today. After laughing a bunch with Mana Tracey in the picture below, he started talking to us (in shygun-sorry i know it's spelled wrong-his tribal language). We got a tia to ask what he wanted/needed and translate since we couldn't understand what he kept saying over and over and when asked he said he didn't need anything he just wanted to play! Melt my heart...the cutie pie!***

I have another prayer request…unrelated to Dionisio (YEAH-but I’ll update you more on him Monday evening after he sees the pulmonologist/allergist…let’s just say…I love Tia Julietta…and apparently Dionisio is fond of her too!)

We have a new kid in the baby house: Julio!

He’s 3 years old and he arrived in the center on Friday and in the BH on Saturday as he spent his first night here in the big boy dorm with his brother. His mom is in the end stages of Aids and can no longer cook or take care of herself, much less Julio or his 6 year old brother. Their father is with his other wife and their family deserted them when they found out she had Aids. A Catholic missionary group has been helping her in the home, but she is too ill now so they have taken her to their center..but they have no program for kids. So they are both with us (of course, his brother is too old for the BH, so they have had to be separated). Upon the home visit we make before we take in children, no food or water of any kind was found in their house made of grass and it appeared there hadn’t been any for some time. When there was food, the 6 year old would cook! The community occasionally tried to help out with food, but as it is a very poor community they often don’t have enough for their own families. Julio speaks very very little if any Portuguese-he speaks his tribal language, so he is very confused and scared at the moment-first being taken away from his mom and now his big brother (we do have play dates for the two when we can). The tias try to speak his language to him when they can, but he has to learn Portuguese as well cause it’s what the rest of us will speak and the main language of all the other kids in the BH. He’s smart though…he’s catching on and watching the other kids and tonight as they were watching a cartoon before bedtime while some kids were kidding baths, he was watching it very animatedly. We have seen one smile and he has played tentatively with toys. You can tell though that all the noise and chaos of the BH is a little overwhelming for the moment. His skin is in horrible condition and he appears to have an ear infection, but otherwise he looks pretty healthy…they have obviously gotten enough food from time to time to be ok recently. Both Julio and his brother have been tested for HIV and they are…Praise the Lord, both NEGATIVE!

Please pray for Julio as he is adjusting to the center, being away from his mom and his brother and being in an environment that is foreign where he can’t speak or understand the language! Pray the other baby house tots will take him under their wing and love on him, inviting him into their world. Pray he will pick up on Portuguese quickly and that he will start reaching out to us! Give us the strength to love on him and the wisdom to understand him, despite the language barrier.

Yeah for new kids! We are F-U-L-L-full!!! There’s not a bed left in the BH with 3 new arrivals in the last 4 weeks!

Answered prayers and updates

**UPDATE 9/19/08: The new nurse has to finish out her contract at Hospital Central so she won't be joinging us till the beginning of October which is a huge relief and an answered prayer as we are still dealing with Dionisio being sick and I just don't have the time or energy to be up at the BH in my down time training someone with my pathetic version of Portuguese at the moment**

I have some answered prayer requests:

• I started Dionisio playing with food yesterday….3 times before his bottle we played with banana baby food….it was all over both of us and he managed to maybe eat about 2 spoonfuls despite the fact that I never actually put the spoon into his mouth. Today we tried apples….and apparently he LOVES apples, because he let me put the spoon into his mouth and ate the ENTIRE jar!!! Praise God! When it came time for the milk, he wanted nothing to do with the bottle. This afternoon we tried peaches…apparently that is also not his thing, although he made some great faces. We managed to eat about 5 or so spoonfuls though and he still let me put the spoon into his mouth….we might be buying a whole bunch of apple baby food for the moment! Baby steps.

• We actually got a consult yesterday with a GI surgeon for today…until we found out it was the same surgeon that operated on another one of our kids in the BH…he did a horrible job repairing a huge hernia she had and made us come back so many times just so he could get the money. So we cancelled first thing this morning and our medical director for the clinic called the private pediatrics side of the hospital and asked if we could have an urgent appt with a pediatrician she heard was amazing. She was not working today, so we asked how much we could pay to get her to come in…about 50 US dollars later and we had a deal (we have a socialist medicine system here so most everything is free or nominal charge but it takes forever, the care is bad, and you never see the same person twice….but you can see the same mds on the private side by paying them….then it’s your time you bought…the place is cleaner, people smile more, they are nicer to you and suddenly they actually care about you…interesting what money does huh?) anyway, she was amazing and really knew her stuff for a Mozambican md. I was quite impressed. She actually gave us her cell number and told us she wants us to see a pulmonologist on Monday and we aren’t to pay! She works on the hospital side in pediatrics on Mondays, so she said to come, call her and then she’ll call the pulmonologist and we’ll have an on the spot appt. She agrees that the frequent infections, skin infections, and cough could all just be allergies. So we are upping our dose of Claritan, changing to soy milk, and waiting to talk to the pulmonologist on Monday when we will set up an allergy skin prick test. If anything, we know have a great contact for a pediatrician for the future. And we are up to 8kgs now….yeah! Ok, but that’s cause we are force gavage feeding him milk through the tube…but I’ll take ANY and ALL weight gain from him. We are totally trusting the Lord’s provision and timing for Dionisio. He is His anyway, and I know that He has plans for him. We just have to be patient!

• We have a brand new Mozambican nurse starting on Friday. She’ll be working Monday thru Saturdays 7:30am to 1pm which means sometime, a long time from now, I’ll actually be able to sleep in! For now, it will be A LOT of work as they don’t do much of anything in the hospital and so we get to train her…I mean…I get to train her. She only speaks Portuguese so this should be interesting. It also means I’m going to work a lot harder because not only am I feeding Dionisio during the day all day and taking him at least half the nights during the week to feed every 4 hours, and caring for the baby house kids, and doing all my medication shifts, but I now have to take the time to attempt to explain everything to her in a foreign language as well as be in the BH for her hours so that I can make sure she knows what she’s doing/is trustworthy around all our precious medical equipment and medicines we keep stored in the nursing office! Did I mention that one of our other western nurses just left yesterday to get married and won’t be back for 3 months…..so we’re short handed as well!

Ok, prayers for my energy, patience, wisdom, and direction in training this new nurse as well as caring for Dionisio!

MY ADDRESS!!!

I finally have an address of my very own:

Erin Welton

Suite 535

Private Bag X11340

Nelspruit 1200

South Africa

It's in South Africa and my box should be checked at least once a month since someone from the base usually goes out to Nelspruit every few weeks or so. It takes around 4-6 weeks for packages to get from the States to us. Note: your package may be opened by the missionary picking it up so that it can be distributed among suitcases and safely taken back across the border to Mozambiqe. Word of Caution: when mailing packages the post office will ask you to list what is in it and give it a value....listing anything of value such as dvd's, cd's,ect or listing the value as high increases the amount of customs I have to pay on it when recieving it and increases the chance that someone else might find that they would like what ever is in the package instead of allowing me to be blessed. We haven't had too many problems with packages not making it, but you always have to err on the side of caution here. I look foward to snail mail and fun packages. Thanks to everyone that has shown me so much love and support over these last few months!

New plan for Dionisio

I’m back from South Africa and came home to a sweet smiley Dionisio who STILL has his naso-gastric feeding tube in.  I heard that he pulled it out (again) in defiance over the wkend and protested upon it being put back down…but he still refuses to let any form of food get anywhere near his mouth.  We have all looked and so far there is NOTHING in his mouth to see that should be causing him pain, he has been on allergy medicine for a week almost and reflux medications for 5 days now without any improvement.  So, I’m taking a new approach….we are going to buy lots of different kinds of baby food (Fruits, veggies, ect) and try a different kind every day at all the daytime feeds…we are going to play with our food…he loves his hands and fingers so that’s where it’s going. He can play with the spoon…..make a mess…I don’t care…I just want him to find SOMETHING of a food-like substance that he likes that we can get him to put into his mouth….we are going to try cup feeding and sippy cups as well! 

 

Now, I know at this point a few of you are recalling that he’s not quite 9 months and you’re a little scared at my plan of introducing all kinds of foods and a different one each day, and gasp…sippy cups.  First…we’re in AFRICA.  2^nd….i know you don’t want to hear it, but almost all of our under 2’s are on some sort of peanut product (yes, even peanut butter) to beef them up, including my 5 month old, and not a one of the kids on the center has a peanut allergy (out of 350 kids).  I will make my own baby food if I could just get the kid to eat.  He is getting the royal treatment at the moment.  Anyway, my point is we’ve been at this for 2 weeks and the kids not progressing.  At least he’s not sick anymore and we are ALL very very thankful for that, but I think a few of us would like a really good night’s sleep without having to wake up every 4 hours to feed him.  Please continue to pray for us, that we find something that works and that he will stop this “food is bad” nonsense!  Also, we are going to “mark” a ear/nose/throat- GI(gastro-intestinal) doctor appointment just in case (which means that sometime in the next month (hopefully) we’ll go for the consult!)    Thanks again for all those praying and sending me encouraging emails.  I’m well rested after my 3 nights away and ready for Dionisio to bunk with me again starting tomorrow night.  I am very thankful for each of you.  Keep the prayers coming!

The tube's back and other Dionisio updates

The tube’s back…yup.  Last night Dionisio learned a neat trick….and whoever told him this little factoid, is in t-r-o-u-b-l-e when I find out!  He learned that he DID NOT, in fact, HAVE to swallow the milk we were syringing into his mouth just because it was there….so cute.   He started holding it in his mouth for 5 min or so then just spitting it out everywhere…my favorite was when it was back in my face.  Did I mention that the entire hour it was taking to feed him he was squiriming, crying, screaming, hitting, scratching, and covering his mouth with both arms….perhaps I forgot.  No trick in the book could get him to swallow and it just got worse and worse.  So today, the tube went back down….1.5 hours and 3 nurses later…the tube was down….and you think WE torture HIM…..I’ve never seen a kid so ballistic, petrified, or beside himself just for me to (literally) touch his cheek!  Needless to say…he’s still a little mad at me tonight and refuses to smile or laugh for me! (some of you are probably wondering at this point why I have a almost 9 month old on formula every 4 hours around the clock…the short answer:  he has a slight oral aversion as a byproduct of being hospitalized for his first 3 months of life…it took 2 months for him to start swallowing breakfast cereal-aka papino-and we are now introducing him to soup (which is the next step up food wise we have)…he hates bread, crackers, teething biscuets, teething rings, medicine, your finger, sometimes the pacifier, and currently:  milk!....also, he’s only 15 lbs and has been for over 2 months now…yeah, we’re NOT gaining wt.  So he gets the formula every 3 hours until he learns to eat big baby food.)

 

Tonight, he was a guest at our home group meeting as all the missionaries laid hands on him prayed over him.  Things we do know with some degree of certainty and or have treated him for:  Hiv negative (per the fast test that tells you if they have antibodies to HIV which means they’ve been exposed); TB negative (tuberculosis); bacterial infection; fungal infection; oral thrush (yeast in your mouth and throat); no cardiac disorders; malaria negative (but we treated anyway and are halfway through treatment); started claritan (for allergies yesterday) and started medicine for reflux (in case he’s having esophageal or gastric reflux and it actually hurts to swallow.)  Anymore ideas???  Basically we’re just throwing stones in the general direction of a diagnosis…we have now talked to/seen…..at least 8 mds….i probably missed someone in there too (some of them Mozambican, some of them Westerners).  He’s frustrated, I’m frustrated, we are all frustrated.  And we’re just praying for wisdom, patience, stamina, and a miracle.  The odd part of the whole thing?  He eats like a champ in his sleep!  Seriously odd behavior…..i need a baby psychologist or something to diagnose him. 

 

So he’s bunking with me again…this is night 6 out of 7 he’s slept over and for those of you that just did the math…that’s a lot of feedings and a lot of hours I’ve been feeding him every 4 hours around the clock for almost 7 days now, plus the fun virusey things going around the baby house I have to deal with, plus consults for the other kids, plus giving/preparing meds, and in general assessing the health of the rest of my 42 kids.  I’m tired.  I’m thankful for the daily bread He has given me…but I’m tired and discouraged and frustrated we can’t figure this out and have no where else to turn!  I am leaving for South Africa on Friday morning and won’t be back till Monday afternoon so this is the last night for awhile I’ll have him.  I’m excited and very thankful for the respite.  Please pray for Dionisio, myself, and the rest of the medical staff and baby house staff here as we care for and love on him!  Also, for my medical friends…any ideas??  Pass them on!

In His hands,

Erin Welton 

Dionisio's results

Well, I should have known that it was going to be a long bad day when Tracey called me last night at 10:30 to say that Dionisio had pulled out his ngt and then it took me a whole hour to put it back in, tape it, check placement, and calm him down (yeah it should have taken like 5 min…..you haven’t met this boy).  Then when I got to the baby house this am I was told that he pulled it out AGAIN at 2am.  Hmmm….just what are you trying to tell us? 

 

We went to the private clinic in town without the ngt.  We managed to syringe feed him MOST of his feedings or get him to take a little by bottle (horray!)  Apparently, he’s in to showing off because the entire time we were there he was all smiley and cooing and laughing….funny funny….you supposed to be SICK when we are at the private clinic as our last resort…play it convincingly.  Guess no one told him, cause he even took half of his 2p bottle by bottle while we were waiting in the waiting room and then allowed me to syringe feed him the rest.  Everyone thought he was really cute.  Yeah, yeah…..so the results:  HIV NEGATIVE!!!  We were ALL surprised and I still don’t believe it!  What else don’t I believe?  Oh that ALL his blood tests (blood counts, chemistries, cardiac and liver enzymes) were all impeccably NORMAL.  His x-ray was unremarkable.  I looked at the other erin and said, are you SURE those are HIS results???  So after seeing 2 big person mds and a pediatrician who was very uninterested in us (probably cause he was called in on a holiday…what holiday? that’s still unclear, but it’s “official”), we were told he had allergies and that we should give him claritan and keep his environment more clean.  What I wanted to say was A-he lives with 32 other kids in one house.  B-they bleach the floor twice a day and he doesn’t crawl so believe me his blanket is a clean environment and C-he could be leaving in a reed hut with sand as his floor, a fire outside for cooking, no door or real roof, and could be carried around in capalana all day walking the dirty dusty streets where people throw trash and pee on the side of the road.  But, I refrained from mentioning such and said thank you very much.  We are still waiting for the results of his ppd (to test for tuberculosis) and will return to see yet another md (a 2^nd pediatrician) and hopefully will get some more advice on why he’s constantly tired, having lots of infections, isn’t growing, has a very poor suck for a 9 month old, is super behind developmentally, and has a murmur and palmor pallor (his palms are as white as my hands…no maybe whiter and I’m currently very pale) like nobody’s business!  We are very very thankful that he is HIV negative and that there are no signs of anything serious, but we are all perplexed as to what’s going on with this guy and we still don’t have any answers…also this is the last line so…..

 

Thanks for all the prayers.  They even got all their blood on the very first stick today (yeah)-Dionisio and I were very thankful for that and they had a real xray machine where I could lay him down on a bed so they could do his chest xray while he slept like the baby that he is (as opposed to standing behind a lead shield and holding him by this arms dangling in front of the xray machine…yeah that’s what they do!).  At least we got a few answers.  Tonight, he’s bunking with me again until I can reliably get him to take his feedings by syringe or bottle for at least 24 hours before I release him to the very medically untrained tias that work in the baby house!  I will update you Wednesday when we know more!  Thanks again to everyone that has sent emails of encouragement and kept us in your prayers!  I feel very refreshed today after a good night’s rest and a two hour nap yesterday!

 

We're taking him to a private clinic this time...

I’m sorry I can’t report better things, but things are pretty much unchanged.  Last night for his 10p and this am for his 6a feeding he refused the syringe totally and acting like he wanted the bottle so I let him try….30 min later and one tired baby the most he’s taken is 50ml (that’s less than 2 ounces and we gotta get at least 5 in him!)  At least he’s showing interest in eating again though…..but for the rest of today he refused his papino for breakfast and soup for lunch and didn’t take more than ½ an ounce by bottle the rest of today….soooo progression and regression (I feel like I’m back in the NICU-1 step forward, two steps back)!  He’s been a lot more alert and playful today, but not back up to par. 

 

Decision made:  we are taking him to the private clinic in town tomorrow (actually where any of us go when we are sick) and asking for another xray, a complete blood workup, and a  complete physical.  I pray we will figure out what is wrong with him.  This episode is just an acute event, but he has been going downhill for the last month.  I have been trying to figure out what is wrong with him ever since I got here.  Tracey, the baby house director is taking him for the night and thankfully one of the other nurses did 2 of his feedings today for me so I could sneak a 2 hour nap that was beyond needed….there’s a nasty virus that  is going around the center and the baby house and it’s making the kids spike temps of at least 103 degrees for close to 24 hours despite alternating Tylenol and ibuprofen so between Dionisio, giving/preparing meds, and the viral thing….this has been an INSANE weekend.  I’m thankful I can go to bed early, sleep in late, and hopefully, it will be uninterrupted sleep! 

 

Please pray for our consult tomorrow that we get a great doctor, that they really listen to us, and that we figure out what is wrong with him.  We know the outcome might not be great, but we are believing that God has great things in store for this little fellow as his mother has died, his father abandoned him right after while he was sick in the hospital and only 2 months old (the hospital actually called us and asked us to take him), and he has never been a well kid.  He has overcome a lot and does NOT have the spirit of a fighter so I know it’s by the grace of God he’s still with us.  Ok, I’ll email updates tomorrow with the results of our consult!

Dionisio update

We’ll the good news is I saw the first smile, coo, and giggle out of Dionisio that I have seen in at least 2 weeks!  The bad news is he’s not really eating still.  The most I’ve gotten him to take all day is less than an ounce with a syringe…so it’s down the tube it all goes.  We are now on every 4 hour feeds and all milk (no more mastura).  His eyes aren’t sunken anymore and his fontanel is barely sunk so all in all we’re doing more for him here than the stupid hospital has done.  We still are trying to decide what we are going to do with him come Monday…prob. nothing cause it’s a holiday (which is also probably the reason they discharged him).  He finally decided to wake up this afternoon (from 6 am till 1pm he was only up for a total of 1.5….he’s 8.5 months old!!!)  and he’s been a little more playful so that’s good news…but it might also be the scheduled Tylenol I decided to institute every 6-8 hours last night around midnight when he kept stirring in his crib and I couldn’t get any sleep!  We’d both really appreciate lots of prayers soon.  As we still don’t know exactly what his problem is (besides the current pneumonia which seems to always be coming and going) so I’m treating him like a heart baby…restricting his fluids and fortifying his formula with lots of extra calories and letting him gets lots of rest!  As for me,  I probably only got around 4 hours of sleep last night, have been up since 5:30 am, was in the baby house all day but for 4 hours literally from 7a-7p, Dionisio’s sleeping in the next room and I’ve got the baby house again all day tomorrow!  Pray for rest and lots of productive sleep for me….healing and wisdom in treatment and diagnosis for him.  I’ll keep you updated!  Thanks for all the prayers and concerns!

Updates and more prayers for Dionisio

OK, sorry for no updates on Dionisio yesterday.  It is simply cause I didn’t have any.  But now I do and it requires even more prayer.  They sent him home this afternoon with just a simple explanation of pneumonia, less than 3 days of IV anitibiotics.  They did not give him any iv fluids so he is just as dehydrated if not worse now as he was when we took him in.  He has been on so many antibiotics that he know has thrush in his mouth so even if he had the energy to eat, he won’t.  But he doesn’t cause the tia’s just been syringe feeding him the entire time in hospital as he wouldn’t take any by bottle.  So now I have him on even more antibiotics and medicine to treat his thrush as well.  His eyes are sunken and so is his fontanel and he still doesn’t want to eat.  We syringe fed him when he came home at 4p and when I did the same at 8pm tonight I only fed him half his bottle and he threw it all up immediately….all over him, all over me, all over my clean bed….oh the joys.  So an hr later I syringe fed him just a little mistura (an electrolyte rehydrating formula mixed with water for severe dehydration and they use it  a lot here) and he kept it down.  So I did the same 30 min later….Then the other erin and I decided since he would barely wake up it was ngt time (a tube that goes in his nose and down to his stomach)  So 45 min later, I fed him even more mistura by tube and he slept threw it like a champ.  Now I’m off to catch a quick nap and at midnight I’m going to give him even more mistura…I’m hoping to be able to drag this out to at least every 3 hrs cause I’m beyond exhausted and I’m on in the baby house all weekend and I have him all night tonight!  So we have no answers.  I still hear an even louder murmur when I listen to his heart, he looks horrible, and although they drew all the labs I wanted them to, I don’t have any of the results as the doctors are the only ones with that info in this country and you as a non doctor don’t really need to worry yourself with that information…..so.  We might just be going to a private clinic in the am for some lab work.  Prayers for him, prayers for me!  Prayers for wisdom to know what to do!  I’ll write more tomorrow when I’m coherent!  Sorry.  Thanks for all the prayers.

 

 

Emergency prayer request for Dionisio

A Quick prayer request as I'm beyond tired and I have an early and long day ahead of me tomorrow. I'll promise more details later so you'll be completely filled in and knowledgeable for prayer, but as this is very important, I wanted it out quickly. **Sorry (as always) if the medical information is overwhelming!! I try to give enough information for all my medical friends, but explain it enough so the other half understand what I'm talking about...sometimes I forget.**

I had to take Dionisio, a 8 month old, to the hospital this afternoon and he will be staying until they deem him ok enough to come home to us. He has been a very sick boy since birth and we suspect that he is HIV positive. He spent the first 3 months of life in and out of hospital on death's door constantly. It is a miracle he is here anyway. He's been sick on and off since I've been here the last 3 months and I've had him on antibiotics for the last week. He had a some difficulty breathing this weekend, so we changed his antibiotics to more powerful ones, and added albuterol to help with his bronchial spasms and prednisone as well. Monday he had a really high temperature for 24 hours despite alternating Tylenol and Ibuprofen around the clock. He's only been eating so so for the last 2 weeks and had developed a cough that had worsened which is why we had started him on antibiotics. He was just cleared on Wednesday by the heart institute as not having a problem. Last night at dinner he started absolutely refusing all food. All day long we tried to spoon feed him, tried soup, milk, and electrolyte mix, brkfst cereal…but he wouldn't take anything. I finally got 3 ounces in him by feeding him a ml at a time by a syringe into his mouth. He saw the clinic md this afternoon and he wasn't at all concerned that he couldn't keep his eyes open much, his fontanel (soft spot) was sinking in and overlapping on his forehead (means he's really dehydrated) or that he wasn't eating. He said no need to take him to hospital. We didn't agree, packed our bags and went on anyway, praying that we would get a good md and they would discover what was wrong….you have to be practically unconscious to get them to realize something is wrong around here. And as we suspected they weren't impressed at first despite my very accurate account of his entire history through my interpreter (the baby house director, Tracey). He ordered some tests including a chest xray as he wanted to rule out tuberculosis with his cough….he has had it off and on for periods since I've been here, but never persistently. As soon as we went to have the cxr done, we got it in hand and I held it up to the light to do my very poor assessment of it and I just stopped in the middle of the hallway…..My first reaction was: his heart is way too big and pushed to one side. Thankfully all in God's perfect and miraculous timing, the head nurse for the clinic was in the adult er for one of our older kids that had to be admitted and had called one of the mds that volunteers on base for us and works at the hospital fulltime to come help her "negotiate" things….basically so we can get stuff done quickly and slightly more accurately. They both waited for us and met us back at the door of the pediatric ER so they could help us navigate the system. This time I let them go in with Dionisio and the md to "negotiate." Within 10 minutes, Iara was back saying he was being admitted that his heart was too big, there was too much fluid on his lungs and it was pressing onto his heart and even compressing his stomach making him not want to eat. It took over 20 IV sticks to get an IV in the poor kid (I stopped counting cause I was praying too hard, trying to keep him semi-calm as well as keep myself from bursting into tears). Meanwhile he was deteriorating in front of my very eyes…his pulse was racing (before we started the iv sticks) and I could barely keep him awake.

So we need many prayers tonight that they sort out the cause of this all and help him and that there is not and will not be permanent damage to his heart. Although my suspicion is he has had the condition for a long time and this happened way back when he was so sick at birth and has just been building and getting worse this entire time! He has always been a frail kid but has an incredible smile and laugh. They put him on penicillin and prednisone and albuterol inhalation treatments and are going to do an HIV test as well. I will have more details hopefully tomorrow afternoon when we can visit again. As for now I left a syringe and his milk for the night with a tia (Caretaker) and showed her how to syringe feed him…that's right you have to bring all your own food, diapers, provide your own caretaker, do all the baths, give the meds, bring clothes, ect for the baby when they are in the hospital (I'm not sure what they actually DO up there since you have to do it all yourself). Anyway, we would all appreciate a lot of prayers that he would be rehydrated, the infection would clear, the mds will have wisdom and insight to find the source of his problems and give good treatments, and that he will recover quickly without any lasting effects!