New Toys

This boy is keeping things interesting around here (as if that's something new to report). Saturday night, after 4 straight weeks of having a cold he woke up throughout the night complaining about his ear. This is actually new!

A: Ashi owie ear. Tiss it.

So, since we finally have health insurance again (story for another day, sheesh!), I wanted to get him in to get some antibiotics right away. It would be great to NOT have another night of him laying on my chest asking me to "tiss it" all night long. The problem with going to the after hours clinic is of course that you get whatever doctor drew the short straw that week- which of course can be interesting.

Me: He's had a cold for a while now, but just started to complain about his ear last night.
A: My tummy hurts. (Cough, cough)

The nurse puts the pulse oximeter on his hand: (cough, cough)
Me: Hold still Ashi, (cough cough) oh look you're doing great. You've got a 95! That's awesome!
Nurse: No, that's really not awesome. It needs to be 100.
Me: Well 95 is still an A, right?
Nurse: No, more like a C minus.

Dr: Yep, that ear is pretty pussy. But how long has he sounded like that?
Me: Oh, he's had a cold for 4 weeks now.
Dr: Yeah, but how long has he sounded like that?
Me: The whole time, he always sounds like that when he has a cold.
Dr: THAT is not normal. THAT is a problem. He sounds like he's aspirated something. I think he has a blockage and a partial lung collapse. We need a chest X-ray.
Me (in my most patient voice): Did you get a moment to look at his file? yada yada yada TB yada yada?
Dr: He needs a chest film, this is not normal.
me (thinking): It's normal for him.
So we walk across the hall to Radiology. Of course everywhere we go we also get to update records, which is suprisingly time consuming. I was hoping he was big enough to be able to take the x-ray without the "baby torture device" that they usually strap him in, so I asked.

Technician: No, we actually like to put them in that because it makes them cry.

Sadistic pricks!
He made this face the entire time. That's my boy!

And then we saw that his x-ray looked exactly like it did 8 months ago, crappy. Which does at least confirm that all the leftover junk in there is scars, not disease, but that's only marginally good news considering...

So he's taking steroids (goody goody, Ashi on steroids) until we can get into the Pulmonary Doc at Children's. And I'm the worst mother in the whole world, because when he sounds "like that", and his belly is doing "that thing", it's because he can't breathe. So he's got albuterol too. I'm a little scared to find out what fully oxygenated Ashi is like. O2 deprived Ashi is hard enough to contain!

The Coughing

Ashi has this baby doll that burps when you pat it on the back. Only he's certain that the baby is really coughing, not burping (maybe I should get fresh batteries??) Whenever he has this argument with me I wonder if his frame of reference is maybe a little off from your average kid.

Tonight before bed the three of us were shooting kisses at each other. You know, blowing them across the room, then pretending to be knocked over when they hit you? You do that all the time, don't you? Ashi was just cracking up! Which seems to end with him coughing, poor kid. Everything has ended with him coughing this weekend. Drinking, eating, falling down, crying, and now laughing. Kid can't win, even between colds.

I've gotten several inquiries about an update on his TB recently. I vented about it on the listserve but never wrote about it here, let's be honest, my b*tching posts get the all-time most hits so somebody out there must enjoy seeing me all worked up. SO here goes. When he came home (ONE YEAR AGO, WOOHOO) and we started this whole thing with the TB, we got put in quarantine because he was just such a danger to the community. And then, we had the daily supervised intake of the drug cocktail, because missing a single dose would be, well...catastophic! And I certainly couldn't be trusted to properly dose the kid's meds, not when the health and safety of the entire community was at stake. No, not the entire comunity, the entire country ('member the changes to immigration policy for TB kids? I do.) So we had a "proffessional" come "supervise" to make sure he got every last nasty drop. Plus 4 extra doses, cuz "I don't think he really got the one on the 2nd of April" (and the nurse HELLO forgot to show up one whole weekend- and I can't be trusted with the meds). And that whole entire time I can't tell you how many times I had it drilled into me that we have to get every last cell of the TB dead and gone before stopping meds or it will come back all multi-drug resistanty and kill us all instantly in our sleep, or something scary like that. And that the only way to know if it's gone is a clear X-ray (because once you're +, you're + so only the chest film will tell if it's still around).
During the last week of scheduled meds, he went in for a check-up x-ray. To get the "all clear" I was told. But it wasn't, not even close. And the nurse told me he would need to continue indefinately. Two days later they stop his meds and called it good. Huh? All the government's doctors and all the government's men, pulled up a single Morbidity and Mortality report and decided he would probably get better sometime in the next 1-2 years, no more treatment needed. That's comforting, probably. So is the advice that, "well as long as he gains weigh we'll know that he's not getting sick again." Yeah, that piece of rocket science completely jives with the fact that the kid doubled in weigh between ages 11-18 months despite the TB spreading into 3 lobes of his lungs. Do these people even listen to themselves talk? I swear they are making it up as they go along.

In January I called the Health Department to see if I could swing by and weigh him on their scale to see how things were going. The nurse told me she'd be in the neighborhood in a few days and would just come by. Two weeks later I got a statement from my former health insurer that had been billed for the freaking home visit. And the insurer paid it (the insurer that doesn't cover my kids anymore!). I'm not sure who I'm more annoyed by, the Health department for charging me to weigh him, or the idiots at BCBS who are probably going to come after me to repay them for a bill they had no business paying.
Anywhooo... since he is gaining weight (6 ounces between September and January), and his lung junk issues seem pretty stagnant, it's looking like "the leftovers" are just scars. Which is good, because we really are done treating it. If we had to start over again I pity the nurse that comes a knocking on my door, we are not doing that dance again. Since he's little, so he has lots of lung left to grow. Eventually he may even stop coughing. That would rock!

Right now...

there is a (big) baby purring on my chest like a rusty old truck. Again.
Tonight's forecast...
coughing with a chance of mucus. With scattered choking and gasping. Again.

These junky lungs are wearing me out.

Hunger Strike

We have a little problem. Ashi is refusing to take his meds. This is not good. I know, state the obvious, right? But really, this is really really not good. We've got 6 weeks left. Six lousy weeks! Come on kid. No way.

I don't know exactly how it started, but one day he just would not drink his med bottle. (Remember the med bottle, it's the color of that sweater) There would be no breakfast until those meds were gone. Err...9 o'clock, 10 o'clock, 10:30... Feed the child breakfast already, that's just plain wrong!
So the next day we tried to hide it in honey. No. Then I tricked him once with the med bottle at night instead of the morning. Mmm, sneaky sneaky mama.

But tonight, he was even a little hungry to help the process along. mmm... Heck.. No. Mama! Not gonna do it, don't even think about it. Is there any better guilt that putting you toddler to bed hungry? Oh yeah, putting your previously malnourished toddler to bed hungry. Just strike me down now, I suck.

So next up...meds by chocolate. If that doesn't work I don't know what we're gonna do. This is no joke. He needs all his meds, every dose, on time every time. I keep being told how quickly TB can develop resistance. We have six lousy weeks left. If that punk goes and develops resistance we have to START OVER. Uhh uhh, not gonna do it buster!

Any suggestions?

6 Weeks

This is Ashi in the middle of March. Yes, those are flies on his face. The special mothers would swish the flies off his face when he sat on the potty outside.We went to the US Embassy on March 8th to get his visa and permission to come to the US. Even though he was legally my son, he needed an IR-4 from the embassy in order to enter the USA.


Had it been just 6 weeks later, he would not have been allowed to come home. He would still be at Hannah's Hope today.On May 1, 2009 the United States Citizenship and Immigration Service (Department of Homeland Security) instituted a new regulation regarding Ethiopian adoptees. They decided that these children, if over the age of 2 or merely just suspected of having been exposed to TB at some point in their lives must be tested for TB and if positive, treated prior to flying to the US. This must occur after they pass court.

He's only half-way through treatment as it is. Had Ashi been caught in this new regulation, he would have been stuck in Ethiopia until after his 2nd birthday. My son. Unable to come home. As you can imagine, this policy irritates the heck out of me. Not only is it discriminatory (they do not have this policy for many other classes of immigrants- and no other adoptees), but it serves no purpose other than to hurt children. It was put in place with the noble intention of protecting Americans from TB exposure. But it ignores the simple fact that these children cannot spread TB after a mere 2 weeks of treatment. There is absolutely no reason to keep them in orphanages for up to 9 additional months, just so they can complete treatment in Ethiopia.

This little one has been on my mind a lot lately. This is "M". She's been legally adopted by a wonderful family, she has three older brothers and a big sister. I met her on her 2nd day at Hannah's Hope. She was so sad, so scared. She hung close to Almaz. She didn't know what to do, where to turn. She absolutely broke my heart.

She has been watching her friends leave Hannah's Hope with their new families. But she is left behind. Why? Because she might have active TB. It's hard to say, TB can be hard to diagnose when it's not nasty and obvious like Ashi's case was. So she'll have to wait 8 more weeks to be sure- they will need the sputum culture to be complete. Then if she has an active case, she'll need to complete treatment (6 months if all goes well) before she can come home. That's at least 8 extra months in an orphanage, 8 extra months without a family. That is absurd.

Have I mentioned that after 14 DAYS of medication a patient with active TB is not contagious? This is according to the CDC.

Have I mentioned that she has already been legally adopted? She is no less the daughter of her American parents than Ashi is my son.If Ashi were undergoing his treatment in Ethiopia, like "M" may have to, he would have gone through that horrible sputum procedure alone, in an Ethiopian hospital. He would not have access to the opthamologist that was able to make sure one of his drugs wasn't making him go blind. He would have to get in a van every single day (no carseat either) and go to the hospital for forced medication. They would have no time or patience to mix it into his bottle and coax it into him.

Climbing up to steal the car keys- again.

The solution is so simple. The kids need to be allowed to be tested for TB and begin treatment soon after they enter the orphanages. And as long as they have been in treatment for at least 2 weeks when their adoption case is finalized, they should come home. It's as simple as that. The children get the treatment they need, Americans can continue to forget about this disease, and the kids get to go home to their families. Why can't the government ever keep it simple.

Progress (In which I digress into a long rant regarding TB)

Today marks a momentous occasion. Drum roll please... Ashi finally got his first childhood vaccinations, at 20 months of age! I was starting to brace myself for the dirty looks and yet another round of suspicion from my well meaning local health authorities. You know, for being "one of THOSE parents" that doesn't get their kid vaccinated :) It wasn't for lack of trying though. Lord knows we've gone to the doctor enough in the last three months, that's for sure. But today, yes mark it on the calendar, TODAY we went to the pediatrician and Ashi WASN'T SICK! He finally qualified for his first round of immunizations. Poor kid, that's what you get for taking a whole four days between colds instead of your usual 36 hours.

Next week also marks the half-way point (we hope) in our delightful TB treatment. A few weeks ago the sputum culture finally completed (it took 7 weeks), and we were able to drop down to two drugs (in mega doses) twice weekly. The best part (okay, it's probably a toss-up because NOT having the Drug Nazi come daily is definitely a huge perk) is he got to drop the really nasty drug that has the worst possible side effects (vision damage, yuck). But before we could do that he had the pleasure of a full optical exam- did you know that really dark eyes need a whole bunch more of those dilating drops? Yep, we're learning lots of fun random things around here.

We also learned that if the doctor talks to you over the phone and then calls the hospital to tell them you'll be admitted that day, the doctor gets to bill you for "observation care", which is surprisingly expensive. And when you spend the night in the hospital in that fancy quarantine room, it's really really expensive, and the insurance company thinks it shouldn't be covered- even though we were required by law to be admitted. Yes, by law. That would be WAC 246-170-041. That's the one that requires the Drug Nazi to personally observe Ashi physically ingest every last dose of his meds. While children with special needs are being denied therapy because of budget cuts, the state is sending nurses out to dispense antibiotics- it's brilliant really.

And even though they seem happy to cash my ridiculously big premium check every month, the insurance company doesn't really have much of an urge to actually pay most of our bills. Would you believe all of Ashi's medical bills would honestly be cheaper to pay than the premiums have been? Yep. And yet I still have to fight to get anything paid. Oh ya- they even cancelled us for almost three months- whilst cashing my checks. Funny how that works, huh? But you know what else I learned recently? WAC 246-170-021(2) states "In the absence of third party reimbursement, the local health department shall assure the provision of inpatient or outpatient care, including DOT/DOPT and case management." In English, that means that even though they won't admit it when you mention that these "required" medical expenses aren't being covered, the Health Department is actually responsible for paying the bills. Yep. Funny how much more gets done when you start quoting municipal code at people.

I really find it dumb that the state is having to pay any of his medical care. But if they wouldn't insist on making it so unnecessarily expensive... Why on earth are we paying a nurse to personally observe him taking ten cents worth of antibiotics every day? It blows my mind.

But this shall soon pass. Stay tuned for Part II of my rant against all things TB. This is starting to turn into a mini series. I'll have to divert to more fun happenings tomorrow. Like pictures of toothless Joe the Hobo (that would be Christian, who will be subsisting on oatmeal and applesauce before long).

Mmmm....yummy!

Drugs! Don't those just look tasty? This is what we have to hide in Ashi's milk everyday, it gets all crushed together into a scrumptious looking red powder. Ah...better living through chemistry.










Mmm, technicolor milk, that's rad!









I just noticed it's the same color as his sweatshirt. Wow, he is one super fly guy!

So currently Ashi is still being treated for multi-drug resistant TB
(MDR TB in CDC lingo), but last week the lab finally noticed some bugs growing in his sputum from the aspiration. Hopefully in another week or so they will be able to test those bugs to determine what drugs are most effective for his strain...and...cut his meds in half! Oh that would be nice. How would you like drinking that "milk" everyday?

I actually wonder what it tastes like, it's got to be dang awful considering how many jalapenos it took to sneak those meds into his food. But there is just something magical about the bottle, he luuuuuuuvs the bottle. He's yet to get anything but adulterated milk in it, but he don't care. It's either got the chemical cocktail, or iron drops (have you ever tasted iron drops? You could gag a cow with those suckers) or poly-vi-sol, or fortified rice cereal. And most often, a combination of the above.

But other than the yucky drugs, and the nurse coming everyday (oh big brother) the biggest bummer about being sick is missing out on all the fun stuff. As soon as we sprung from quarantine Ashi had his first class of Sensational Toddlers at the Whatcom Center for Early Learning. This is sooo much fun! The kids get stripped down to their diapers to get all messy with different sensory activities- like driving trucks through chocolate pudding, painting with spray foam, playing in a pool of shredded paper, squishing gak, you name it. And then, the best part, someone else cleans it all up! They honestly cannot get too messy. It is a type-A mother's dream come true- because it's not in my house!

"Uh... you want me to touch THAT?"

Two minutes later he discovered the pleasure of licking his fingers (it's chocolate!) And the rice and beans were the biggest hit. I was digging those out of the cracks for the rest of the day.But, quite predictably, two days later he was sick. Nothin' much, just a little cold. But boy o'boy, it is no fun to have a cold when you have TB. Coughing and screaming through the night, wheezy whistling breathing, cruddy junky lungs, choking when you eat (which unfortunately ends with vomit), basically no fun at all. He's got an amazing immune system, but his lungs have trouble keeping up.

After only 2 classes, the whole flu thing starts going around (or as the cool kids say, "the swine"- but really it doesn't matter, it's a flu) and the Health Department thought it would be best for Christian to stay home from school for a while too. Elementary schools are such germ factories, it isn't that I'm not a fan of that feature, but we probably have some fresh and different bugs floating around on this side of the pond that Ashi's not used to.

So the kids have been back on house arrest for a couple of weeks now. Christian is such a trooper, he's doing really well with it, and my mom is keeping him busy. He's had some playdates with his nice clean germ free friends Brady and Jackson, his Sunday School teacher Purell's the crap out of him at church, and the weather is finally cooperating for more activities where the kids aren't going to get coughed on or touch boogers.

Unfortunately for Christian though, the coup de grâce has certainly been missing out on our Sunday morning McDonald's Playland dates with the Boyle's. It's the little things in life.

Monkey on my Back

Warning: Snarky Post Ahead

Photo credit: Sandi Heinrich Photography

No, not this little monkey. Oi, the Health Department (sorry Sabina, not personal). Just a little rant because I think this is dumb. First of all, they HAVE to OBSERVE me give Ashi his meds EVERYDAY. Okay, fine. So the nurse comes at 8 or 8:30 every morning, crushes some pills, and watches me put half of them in a bottle. I sign the paper, and she leaves. Your tax dollars hard at work here! The "doctor", who I have never met (previews of single-payer, government run, health care I'm tellin' you) makes all the decisions, and the nurse basically transmits the info over to me. Lots o' fun.

Remember the stomach aspiration procedure? Who could forget? Well no TB was found in the mucus. So that's good news, right? Oh no. That means we can't rule out any medications, we must assume he has Multi-Drug Resistant TB, and he has to keep taking all four drugs everyday. These drugs of course make him poop like a newborn on steroids too. Lots o'fun.

Then, he loses two pounds in the last two weeks. Which the doctor (who has never laid eyes on him remember) thinks is very serious. Oooh, he must be succumbing to the TB (gag). Uh huh, this child eats like a linebacker, sleeps 11 hours at night, and runs around all day long with his big 'ol pot belly hanging out (did I mention he doesn't even cough?). Yes, he must be deathly ill. Blech. The actual pediatrician, who actually examines him (novel idea), thinks he's fine. Because, maybe having diarrhea 8 times a day is making it a little hard to keep the weight on.

In the meantime, the Health Department is getting together a web cam system, so they can "observe" his medication intake without intruding on our home everyday. Yep, I feel so much less violated, thanks. Because they absolutely MUST watch him take it. Well, now that his "seclusion" is over they don't have to observe him take it on the weekends, just Monday-Friday excluding Federal and State holidays. Puh-leaze! So what if we go out of town sometime in the next 6-9 months? All this because I apparently can't be trusted to remember to give him his meds everyday. Nope, I couldn't possibly remember that. I mean, I can qualify to adopt a child, but obviously not to care for one.

Today is Saturday by the way. Someone forgot to drop off our weekend meds yesterday, or are we skipping the weekends? Hmm. (He's on the "daily" regimen, not the 2x weekly one BTW for all you medical personnel out there) We were up and ready at 8am when it occurred to me that meds hadn't been left Friday. I guess it's okay to skip two day's meds, as long as they can watch him get them during the work week. Yep, let's just medicate him on workdays, that sounds good. I'm sure that is the latest greatest treatment protocol. Because the mother can't be trusted and Uncle Sam is the one paying the doctor. I feel good about that. Really good.

Disclaimer: This post and the opinions expressed herein have nothing to do with any individual staff members at the Health Department. I realize they do not establish these regulations, they merely follow them because that is their job. So don't go causing more trouble for me.

Keeping it Real

After much debate, we're keeping it real around here. This blog is my 21st century "baby book" and the following belongs in Ashenafi's story.

A little summary of the post adoption medical fun we've been having around here. For me personally, I got to get very sick in Ethiopia, took a new antibiotic, had an allergic reaction to said antibiotic, and continued having an itchy rash for over a week afterward. Then somehow the combination of wearing my Ergo carrier constantly, paired with my lovely itchy rash, created a ring of tiny red blood vessels popping out all around my waist in place of the rash (I swear these things were related somehow). So I cut back on the Ergo so my torso could recover, and now I have two sprained wrists (tolerable- not serious just painful) from packing around 26 lbs of kid 18 hours a day. We are becoming very fond of our nice comfy stroller.

Ashenafi is probably wondering what on Earth I'm complaining about, because he's been poked and prodded, force fed medications, had his excrement studied and been subjected to countless other bodily injustices over the past three weeks. Here's a little rundown on his experiences.

When I first received Ashenafi's information from AGCI and discussed it with the International Adoption Pediatrician it was clear we should expect Ashenafi to test positive with a case of latent (also called dormant) tuberculosis when he came home. My pediatrician adopted a child from China who had the same condition and she told me what to expect, she said it was not unusual with international adoptions of all ages, and explained why a TB infection is not imminently dangerous (unless left untreated) or contagious. Eyes wide open, bring it on.

So first order of business when we got home was the full medical work up. At our first doctor's appointment Ashi screamed himself blue at the doctor, got weighed and measured (20th percentile for height, 60th for weight- does Hannah's Hope fatten them up or what!), and we took a very long list down to the lab.

When we got to the lab they took one look at the orders and one look at Ashi and said, "This is all for him? I don't think we can draw that much blood. How much does he weigh? Okay, we can only take 17ml, is he well hydrated?" That was fun. We also left with several containers for the parasite tests (aka poop samples) I would be collecting.

At home I had to call the lab to get instructions for collecting the, uh, samples. "Just make sure the stool doesn't come in contact with the diaper or any urine." Yeah sure, no problem. Did I mention he's 17 months old and doesn't understand English? "Oh, well you're in for a lot of work then. Most parents just put Saran Wrap in their diaper." Can you tell yet that I was talking to a man?

The good news, after 4 days of catching poop, we have no parasites. I was told that it's pretty uncommon to come home without any bugs at all. We also got back all his labs and found out he won't need measles or Hep B shots because he's immune to both, yay!

Doctor's visit #2 was for the TB test. The poor nurse (not out regular one) thought she was just coming to read his test, not administer it. Poor thing, it is not fun giving a baby a TB test because you have to slowly release the liquid under their skin while they squirm and scream.

This is what a positive TB test looks like. A very large and very hard red lump. It even looks painful. This little bump wins you a ticket to the baby torture device used for chest x-rays (a plastic tube they strap them in with their arms over their heads). I remember this device well, we saw it too many times when Christian had pneumonia at this age. At this point I'm sure Ashenafi was convinced that each time we go to the doctor they try to invent a new, more miserable form of baby torture. Boy did they prove him right!

This is also where everything turns upside down. Ashi's cough and cold had gone away, his growth stats and exam showed he had made great progress in the last 6 months and is doing really well. His chest x-ray was supposed to come back clear and we were going to do a long course of antibiotics to kill the TB infection so it wouldn't become TB disease and he wouldn't ever get sick from it in the future.

Instead we got this.That sign says we're in a special negative pressure room to prevent air escaping and that all hospital staff needs to wear this

to come in our room. Talk about freaking a poor little guy out. He had already decided that the white coat people could just evaporate for all he cared, when they all put on space suits and started poking him some more.

We had a lovely hospital stay

and someone went to bed around ten and woke up at six. Someone did, not me. At 6:30 the space people came in a put him in a straight jacket (blanket swaddle- what's the difference really?) and stuffed a tube up his nose and into his stomach to suck out the mucus he swallowed during the night. They didn't find much in his stomach and luckily stopped when the mommy pointed out the blood coming out of the sucker thingy. This was not fun for anyone.

But Mommy brought oatmeal and bottles, so soon all was well again.

Then a nice doctor came to show us the chest x-rays and point out all the yucky stuff in his lungs and how widespread the inflammation was. Unfortunately the disease is not well sectioned off within the lungs as is often the case, but luckily no holes in the lungs and no spreading to other organs.
So we got to go home, where the Health Department has been conducting his treatment. He gets four nasty antibiotics everyday, that have to be crushed up and mixed into food. Luckily spicy Ethiopian food hides the drugs moderately well, but it is still taking two meals and two bottles to sneak it all in. After the labs come in from his stomach aspirate we can hopefully drop two of the drugs. He'll be on these drugs for about 9 months to kill the TB, after which he will have a pretty stellar immunity to TB (add that to his list of nasty diseases he's immune too!). His lungs will grow and heal, and because he's so little the long-term scaring in his lungs should be pretty minimal (or hopefully nothing at all).

For a little while longer we will be avoiding "enclosed public spaces" as requested by the Health Department, and praying for plenty of nice weather so we can get out an about and not be housebound. This means no church, doctor's office or McDonald's (sniff sniff), and lots of the beach, park and drive-through! But luckily children very rarely pass TB because they don't cough hard enough to spread it. Adults pass TB, children just catch it. The nurse who comes to our home and sits a foot away from him doesn't even put on a mask. She also had no problem with Asher spending the day with us today and tells me they won't be testing any of the people we've spent time with since we came home.

She did give me, Grandma and Christian a TB test. She told me today that she really likes Christian- who was super brave and is just a kick in the pants in general. Our TB tests all came up negative, which considering he has been literally coughing in my face for almost a month now, is a pretty good indication that he hasn't been contagious.

So that's been our medical fun and excitement post-adoption. There's nothing like bonding while helping hold your child down to be poked and prodded :)