Friday, September 21, 2012

The Great Tuberculosis Fiasco

Michelle requested I play the TB card first so here goes.

All children who are adopted internationally must undergo a physical exam and some blood testing prior to being issued a US visa.  Some children, based on their background, medical diagnoses, etc., undergo more rigorous testing.  Bamlak and Hiwot fell into this category and had to undergo extensive testing for Tuberculosis (TB).  This testing began in December and involved TB skin tests, chest x-rays, and serial sputum cultures.  I later found out after much investigation that the sputum cultures were actually gastric aspirates.  It is routine that these cultures grow for 8 weeks before they are deemed negative and the US Embassy clears the child/children for entrance to the U.S.

Backpedaling a bit; when we visited Ethiopia last December, I left saying that I was 99% certain Hiwot would test positive for TB.  For the year prior all of the monthly updates we received indicated she was generally sickly, never gaining weight, usually losing one month, going back up the next and continuing that cycle.  She had frequent colds and GI illnesses.  Spending a week with her, it was obvious that something was going on.  She was just weak and didn't have any stamina.  She would break out in cold sweats with no warning, had a persistent cough and runny nose and just didn't look super healthy.  A positive TB test would be a pretty huge setback in that she would in all likelihood not be released to our custody without receiving months and months of treatment.

We were on pins and needles once testing started waiting for 'the call.'  I was shocked when our agency called to tell me that the children received Embassy clearance.  I told our coordinator to get an appt as soon as humanly possible and that I would book a flight within days.  She tried to convince me to wait a week or two, but something in my gut told me we had to hurry.  Maybe I felt burned from our experience in Kyrgyzstan, maybe Mommy Instinct kicked in, maybe I just desperately wanted them home, but we threw it together and I was down there in a few days. 

Fast forward to the day after week got home.  The phone rings and it's our coordinator calling to tell us that the US Embassy made a horrible mistake.  They neglected to let the kids' cultures finish growing before clearing them.  Hiwot's TB culture turned positive in it's 7th week on the day that our agency wanted us to arrive in Addis.  Thankfully, I hadn't listened to them and we already had the kids home!

I immediately got on the phone to Pediatric Infectious Disease, our pediatrician, the health department and got the ball rolling with testing here.  Hiwot began treatment based on the positive culture in Ethiopia.  We sat and waited for weeks and weeks for the drug susceptibilities to come back on the organism they isolated from her cultures.  They were unable to get anything so they forwarded it to Nairobi.  Meanwhile, all of the testing we had been doing here has come up negative.  Hiwot had skin tests, chest x-rays, blood tests, bronchial washings, even a biopsy of her lymph nodes.  Everyone, including the CDC is baffled.  IF she truly had TB anywhere in her body - those tests certainly would've found it!  Hiwot is growing stronger and her symptoms are subsiding. 

Many more weeks pass and we receive the devastating news from Nairobi that Hiwot's organism is multi-drug resistant, otherwise known as MDR-TB.  Now everyone's undies are in a bunch!  Think choppers over the house, men in white suits..........

The CDC and the health department are pushing us to start treatment immediately.    I politely declined since treatment involves intravenous medications for YEARS!  Yes, you heard it - a PICC line, IV infusions that are extremely hard on the organs, and a ton of trauma to a little girl who just arrived home a couple months earlier.  Still, we have NO POSITIVE CULTURES on anything here in the US.  None of it made sense.  How could they expect that we would subject her to that type of risk based on a positive culture from a lab in Africa when the highest quality testing HERE was unable to prove anything?!  It got ugly, but luckily our Peds Infectious Disease team is amazing and offered incredible support and advocacy.
Eventually, everyone just kind of backed off.  We will never know what really happened.  It is entirely possible that she is harboring a TB infection somewhere in her body, although unlikely.  This very well might not be the end of the TB story, but we're prepared to deal with it if it rears it's head again.  For now, she's happy and healthy and sassy and we can chalk this up to one more medical mystery for our family!

Wednesday, September 19, 2012

Quickest Recap Ever

March - Bam and Hiwot came home.  They acclimated incredibly awesome! Esen had the hardest time with the transition, but now is the greatest big brother on the planet.  He has grown so much over the summer!  Bam and Hiwot are super healthy after being treated for giardia, campy and a having a TB scare.  That's a really looooong story.  Marissa took to her new siblings right away - loving the attention and the added chaos.  We also celebrated Bamlak's FIFTH birthday!

April - We focused on settling in and getting used to being a family.  Esen celebrated his SIXTH birthday.  Yes, seriously, I don't know what happened - he's so.dang.old.!  Bam & Hiwot started attending daycare and absolutely loved it.  Their English really blossomed as did their personalities.

May - I enjoyed my first Mother's Day as Mom to FOUR KIDS!  It was surreal.  The kids continued to learn how to get along with each other and developed great relationships.  We learned a lot about parenting these new, little people and personalities really started to come out!

June - The start of summer brought lots of fun outside activities and.........a trip to Kyrgyzstan for Kevin, myself and Esen!  We spent 2 weeks in Bishkek visiting Kamila on our required bonding trip (i.e., trip 1).  She is incredible and feisty and beautiful and so ready to come home. We celebrated her 4th birthday while we were in country. The trip for Esen could not have come at a better time.  He really needed something that was just for him that didn't involve Bam and Hiwot.  He was so proud to be back in "his country" and handled the travel like a champ!

July - Marissa celebrated her THIRD birthday!  Unbelievable to me that she is already three.  I look back at the past three years and how much she has changed and accomplished and I am truly blown away.  Not to mention the lifetime of lessons she has taught me in the past three years.  July also brought the start of a very difficult time medically for Marissa.  She was admitted to the hospital on 7/17 and with the exception of a couple of very short trips home, remains hospitalized.  More on that in detail in later posts.

August - School preparations for all four kids combined with Marissa being in the hospital monopolized most of August.

September - School started - Early Childhood, 4K, Kindergarten and First Grade - geez!! Unfortunately, Marissa didn't start with her EC class and who knows when she will, but the others did start school on schedule and are loving it so far. 

That brings us up to date, in a nutshell.  I'll try to elaborate on each kiddo more and get caught up, but at least you know a little of what we've been up to.

Tuesday, September 18, 2012

It's Me

Well....the photo is quite obviously not me, but I am here again.  It's been six months - SIX!  In some ways it seems like a really long time, and in other ways I can't believe all that has happened in that short span of time.  I've often wanted to start writing again, but life gets in the way and the words don't seem to want to come. At least not words that make sense or seem to have any sort of profound meaning.  I need this, though.  I need the therapy it provides - the outlet. I need a place to log what goes on with my family because I know I won't remember it all and frankly I suck at life books and photo boxes and journals and everything else I thought I'd be really great at as a mother.  So, I'm back to blogging (I hope).  I have no frickin' clue where to begin to catch up, but sometimes you just have to jump, right?