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 

No comments: