I cry...

This will be a very difficult post. Numb yet the tears keep flowing. We received word back from the CDC.

Dear Dr. Morozova,

This is in response to your message of July 18, 2011 requesting review and advice regarding this case.

The appearance of the infiltrate in the right upper lobe is consistent with pneumonia due to tuberculosis (TB) or with a non-tuberculous pneumonia. It is difficult to determine if there is adenopathy in the right paratracheal region or the superior right hilar area. Adenopathy would be even more suggestive of TB. The right upper lobe is a common location for TB.

From your description, the child’s symptoms suggest an acute infection rather than TB. However, the radiologic appearance could definitely represent TB.

You have these options:

1. The Ukraine is using the 1991 Technical instructions for TB evaluation. The 1991 Technical Instructions require that, if the CXR is suggestive of tuberculosis, three sputum specimens be obtained for acid-fast bacterial (AFB) smears to evaluate for TB. In a child of this age, gastric aspirates are the method by which to obtain specimens for AFB smears. You should obtain gastric aspirates unless…. (see #2 below)

2. ….based on clinical grounds, you think that the radiologic findings are due to acute disease. In this case, you can wait 6-8 weeks from the start of antibiotic treatment to repeat frontal and lateral chest radiographs in order to evaluate for resolution of the infiltrate. It is important that the non-tuberculous pneumonia treatment not include a fluoroquinolone, as fluoroquinolones are used as second-line TB treatment, and thus could obscure the response. If the adoption timeline does not allow for repeat chest radiographs, three gastric aspirates to evaluate for TB are needed.

3. The 1991 Technical Instructions do not require that TB cultures be performed. However, if you decide to test for TB, and there is a laboratory facility that you trust to perform TB cultures accurately, cultures should ideally be performed. If one or more cultures is positive, drug susceptibility testing should also be performed (may want to consider an IOM lab), to guide individualized treatment.

We hope this information is helpful to you.

If the above information is unclear, please inform us. If we can be of any further assistance, please contact us again.

Sincerely,

CDC QAP

The clinic believes more than likely it is pneumonia but since the CDC sent this letter we have only a few options left.

1.We stay here for 6-8 weeks longer to have a new x ray taken or 2. Allow them to collect sputum samples to test for TB.

We will be wiped out financially with option one. With option 2 it is a risk to Joshua with Down syndrome- to retrieve those samples requires sedation. 

With option  1- if after 6-8 weeks there is no improvement then they begin treating for TB which could require 6 months in country. With option 2 we know quicker what we are exactly dealing with and if those come back negative he is allowed to travel. If we wait and it happens to be the small percentage they are talking about- TB then we risk other children in his orphanage whose health may be more compromised. 

As you know my sister passed away unexpectedly last night- My mother who has been Jacob's primary caregiver these last few weeks found her body in her apartment. As you can imagine she is not doing too well. If I stay in country and Dave returns to allow him to make money (we are 4 weeks unpaid now) then we still would have issues with watching our other children. If Dave stays in country for 6-8 weeks we will not be able to maintain essentially two households. We are praying for guidance from God to make the correct choice for all of our family. Basically if we allow the sputum tests we are placing our new son's life with doctors in a country we are too unfamiliar with. I can not bear the thought of putting Joshua through this and are unsure if that is the path that we will take. We have spoken with the clinic doctor earlier and she is going to discuss it with her colleagues first thing tomorrow morning at which time we will make the hard choice.

Please pray for us. Please pray for my mom who I love with all my heart and it is killing me not be able to comfort her. Please pray for Jacob who today decided not to eat. I fear that my mom's overwhelming sadness is evident to Jacob that something is not quite right. Please pray for Joshua and that God watches over him. I cry for Dave who today was inconsolable, I cry for my mom who was inconsolable, I cry for my Dad who misses his first born, I cry for my children who are far from me that I am not there to comfort them, I cry for Joshua that this promised life for him has not come to fruition yet, I cry for myself because I miss my sister and because I have no idea what to do for any of them. 

I am going to allow anonymous posts with moderator approval because if I get one person posting how Joshua might not be my son when we have to make the biggest decision as his parents for the first time, my head will explode. Thanks for listening and letting me cry... :(

 I cry because I do not know how to break this to my parents at this terrible time