Thursday, March 14, 2013

Post Surgery Update and a LittleTuberculosis Education

Let me start this post by clarifying that MUNNI IS NOT CONTAGIOUS !! Believe me, I understand the questions and that they are coming from a place of just not knowing. Tuberculosis is not very common in the US ( although it is on the rise) so we don't hear about it enough to really know everything about it. I myself didn't know anything about it except that it kills people and it used to be called consumption and it was really sad when Moll Flanders lover died from it. I feel like I had a crash course and thanks to my super investigatory skilled sister, I'm pretty sure we know more about it than some doctors! Yes, Munni had full blown TB and now her lungs are calcified. Yes, she contracted it in the last couple of months. Yes, she contracted it from an adult in her orphanage. Yes, I am angry that a TB active person is allowed to have contact with the children in the orphanage. Yes, I told my agency everything so they could inform the orphanage what was going on. Yes, please pray that if any other children contracted it from that person that they are able to get medical care or better, they are able to come home rĂ¡pido.

The biggest thing to understand is that you can only contract TB airborne and through pulmonary active TB. In addition, it is almost impossible to contract TB from a child. Since Munni's lungs are calcified, the TB there and in her lymphatic system is considered latent - non - contagious. When we got the CT scan last week, I was told to pack a bag in the event we would be admitted. Based on what they found in the CT scan, we would know if her lungs were infected by active TB and they were not. Although they were shocked she survived because it was an extremely bad case, we were cleared by Children's Hospital to go home without any type of restriction or quarantine. This is where it gets confusing: the TB in her eye is active. So why isn't she considered contagious if the TB in her eye is active? Because you can only contract TB airborne- if she cries on you or a toy, you still can't get it. Here is the statement from the Mayo Clinic:

Tuberculosis is caused by bacteria that spread from person to person through microscopic droplets released into the air. This can happen when someone with the untreated, active form of tuberculosis coughs, speaks, sneezes, spits, laughs or sings.
Although tuberculosis is contagious, it's not easy to catch. You're much more likely to get tuberculosis from someone you live with or work with than from a stranger. Most people with active TB who've had appropriate drug treatment for at least two weeks are no longer contagious.

So now you may be thinking, well how did she get it in her eye? TB is super aggressive in children and goes on the rampage attacking other organs besides the lungs. The TB she contracted started in her lungs and then spread SYSTEMICALLY to her lymphatic system and unfortunately, her eye. Ocular Tuberculosis is extremely rare and very hard to diagnose. If it weren't for the several signs- extremely abnormal skin test, spot on the X-ray, confirmation through the CT scan and finally a positive blood test, who knows if they would have ever diagnosed it. A friend emailed me the night of her surgery and told me a heartbreaking story. A family they are friends with adopted a little girl and it turned out she had Ocular Tuberculosis. Only for her, it did not end well because it took them too long to figure out what it was. Remember, it is EXTREMELY rare. By time they diagnosed it, it had affected parts of her brain and eventually led to death. I can't tell you how sad I was reading that email. One thing about international adoption vs domestic adoption that I don't think people really understand is that with IA more often than not, you are literally saving a child's life. I know people complain about our health care system but we are so very blessed with the medicine and care that is available to us here.

Munni is not contagious and I would never put anyone at risk. I hope that is clear. I also am open to any questions; I am a teacher after all :)

Her eye surgery was expected to last between 30 minutes to an hour. It ended up taking an hour and a half. It was very important to me that I could be there when she woke up. They usually don't let you, I guess because of protocol, but my sister and I begged and pleaded and it worked! They had an oxygen mask on her when we got to the recovery room because she was so heavily asleep. It ended up taking Munni almost as long as the surgery to wake up! We finally got her to respond when I asked her if she wanted a mango. She nodded her head so fast I thought she was going to get dizzy and puke!

The doctor said it was deeper than he thought- it was 50% into her cornea and there were also some long feeder like blood vessels. You aren't supposed to have blood vessels in your cornea, which is another indicator that it is TB. She has a cloudy spot that will be permanent. We are hopeful that a good portion of the opaqueness will dissipate. Originally, they wanted to wait to start any TB medication until after they cleared her of parasites. After the surgery, the ophthalmologist wanted her to start her meds ASAP. He felt the protocol she was on (non TB meds) had worked in halting it a little bit but wanted her to start the real deal to keep from any further damage to her eye. He spoke with her ID doctor and they consulted with a bunch of other ID doctors and today they told me what they hope the regimen will be for her. We have to go back tomorrow for more blood work on her liver and renal system to make sure she can metabolize the medicines. Here's the bad news: one of the medicines, ethambutol, carries a risk for vision loss. The risk is low but since her eye is already compromised, it is more of a risk for her. I asked them to try and find an alternative. Whether they do or not, she will be monitored closely. The good news is that they are hoping she will only be on the drugs for 6 months instead of the 9-12 months they originally thought.

I would really appreciate your prayers for healing for Munni. This has been really difficult obviously, but also because this sweet little girl has already experienced so much abuse and trauma in her life. There are no words to express how much it completely blows to watch her scream in not just physical pain, but emotional pain. Please also pray for our bonding as mother and daughter. More the anything I want Munni to feel safe and loved with me. The language barrier makes it difficult because I can't explain to her that I'm bringing her to all of these appointments and procedures because I LOVE HER and want her to be healthy. I'm not so sure she understands that when she gives me her death stare. And if you think about it, will you pray for me too? It has been really hard to take everything in that I've learned about her and all this suffering. I know that I haven't processed it at all. I want to do it in a healthy way but honestly, haven't gotten to the place where I can let the walls down because we've had to forge through all of this stuff.

Finally, if you are adopting internationally, I implore you to please take your child to an international adoption clinic!!!! This might sound crazy but I wasn't going to do that with Munni. My thought process was that I saw the orphanage where she lived, it was clean and she was fed well. She is older and except for the sty, healthy. I have never been more wrong in my entire life.

12 comments:

  1. IA clinics ARE amazing and we thought about not taking Charu there too, however if we adopt internationally again we will do it in a heartbeat!

    We will continue to pray for Munni and for you....there are so many people here that I've shared her story with and whom are praying hard for you guys!!!

    I pray that they are able to find a different med for her and if not that the meds they use don't cause further damage to her eye!!!

    Big hugs to you and many continued prayers my friend!!!

    ReplyDelete
  2. WOW. praying praying praying for both of you- for health, for connection, for attachment, for wisdom. we are with you during this time lifting you up!

    ReplyDelete
  3. Thank goodness for so many things. I often tell people that while a medical history of any kind for an IA kid is good, it is the stuff that is not written down that is the scary part. As parents, and these kids' only advocates, we also have to wear that investigative hat, which you are doing so well, constantly reminding those here that every scenario has to be explored with these kids - not just the obvious. You are doing an excellent job for Munni. In a small way, I think this new "job" you've taken on is preparing you for bigger things, namely the Congo. Thanks for the update as I continue to pray for all the things you and Munni need right now!

    Julie

    ReplyDelete
  4. Oh Kristen, you and Munni have been through so much! I'm so grateful that she has you with her to help her heal. It's a long road ahead of you, but filled with so much grace, mercy and beauty. Bless you, dear friend!

    ReplyDelete
  5. Continuing to pray. Thanks for updating so we can know more specifics of how we can be lifting you and Munni up!

    ReplyDelete
  6. Oops, think I didn't submit the comment right! I'll try again! (And if it went to moderation and I just didn't see the message - sorry for the duplicate!)

    Thanks for the update so we can have more current specifics of how to be lifting you and Munni up! Continuing to pray for you guys!

    ReplyDelete
  7. It's so hard to be a momma and have to put your brand-new-to-you baby (I don't care how old they are-- they will always be our babies-- no matter how old they were when they were placed in our arms) through painful and frightening medical procedures they can't possibly understand. But you are not alone. You aren't the only new momma who has had to do this and on some level Munni knows you are doing everything out of love. Love doesn't need words to be felt and understood. She knows you love her. It will take time for her to truly feel safe, but the love is there and you'll just keep building on it-- a solid, stable foundation-- one step at a time. Get her healthy first. (and I've had to give one of my children medication that carries some pretty scary side effects-- it's hard, but sometimes it's necessary. I still hate it, it still ties my stomach in knots to think about it. But you get through it-- just wanted you to know you aren't alone.)

    ReplyDelete
  8. Your all in my thoughts and prayers Kristen, I believe she knows that you love her and that she will be healed. Your a lot stronger than you know and the processing has already started. I am so thankful that this precious baby girl is with you and you with her. Before long you will be more worried about what she wants to wear to school or not eating all of her veggies at dinner. Lots of love girls and thanks for posting her progress. It usually takes a while before I can comment because I cry through the blog, I fell like I know her and it just breaks my heart, BUT, there are going to be many many, better days and kids are so resilient, I have faith this will all be over soon!! Hugs!!

    ReplyDelete
  9. That is tough. Poor girl. I would think the hospital would have interpreting services available. Could you have an interpreter try to explain what is happening? Hope she is on the mend soon.

    ReplyDelete
  10. Could you have an interpreter at the hospital explain what is happening? I imagine she is terrified. Poor girl. Hope the treatment works well and she feels better soon.

    ReplyDelete
  11. Kristen, I'm just now catching up with all the blogs I read. Wow, I had no idea this was going on. I wish I had the words to fully articulate all I want to say, but just know that we are thinking of you both and praying for you both!!

    Leslie

    ReplyDelete
  12. Kristen, I'm just now catching up with all the blogs I read. Wow, I had no idea this was going on. I wish I had the words to fully articulate all I want to say, but just know that we are thinking of you both and praying for you both!!

    Leslie

    ReplyDelete