The Challenges Ahead

Written on Wednesday:
We met with the surgeon and the ENT yesterday about Pearl's cleft. The surgeon didn't say everything would be a piece of cake, but he didn't wring his hands either. Now we have a plan for her care - something we have been looking forward to having from the first time we saw her photo and knew she was our girl!

She will have her first surgery on May 3rd - the day before her birthday. At this time she will have what is called a preliminary lip adhesion. As I understand it, at this time the sides of her top lip will be joined to the protruding part in the center to check its growth outward and to start the process for a total lip repair which will take place in about six months, depending on the success of the first surgery. About six months after the second surgery, the plan is for her to have the palate closure surgery.

Added on Saturday:
Wednesday afternoon I took Pearl to the pediatrician to have her tuberculosis (TB) skin test read. It appeared to be a positive result. A positive result on a skin test for TB could mean a few things: it could mean someone is infected with the active form of the TB disease or it could mean that someone has been exposed to the disease and has a latent (not contagious or symptom-causing) form of it. In Pearl's case it could also be a false positive triggered by a vaccine that she was given against TB in China that does contain some of the TB virus and can cause this to happen. The next morning we went to the health dept where they confirmed a positive result and ordered a chest x-ray to rule out active TB. The chest x-ray showed something going on in one part of one of Pearl's lungs. This could be an old infection or related to the fact that she probably breathes in some liquid while she eats because of her cleft, but because the doctors cannot eliminate TB from consideration we will have to take Pearl for more tests next week. She will be hospitalized and briefly put under anaesthesia to get samples to test for the presence of TB. We are probably looking at a two-night stay with her.
It is important to know that Pearl is NOT sick. She has none of the symptoms of an active TB case - no fever, coughing, sweating, etc. She also has been gaining weight and looking better and better everyday. That is the opposite of what you would expect for someone who has an active case of the disease. The ladies at the TB office at the health department told me she could not spread the disease even if she had an active case of it, because babies' airways are too small. Even so, we are keeping her to ourselves. Something we want to do anyway for bonding so that is not a hardship at all.
If you have seen us since we have been home (or in China,) you don't need to worry at all! You cannot spread TB unless you are SICK with it, and Pearl is definitely not sick. She is a smiling, sweet happy girl and doing so well!
China has a high rate of TB, and it is certainly possible that Pearl was exposed to active TB at some point. If she does indeed prove to have the active form of it just waiting for its moment to strike, we will be very glad to be able to treat it and get rid of it now. If it is not this disease, we will be glad for that and glad that we get the chance to deal with whatever infection she does have in her lung before she has surgery. I am not sure if this will cause a change in date for that, yet.
So we have many things to be grateful for in this situation. Though I am not eager to check in to the hospital, it is wonderful that we have access to this care for our daughter! So many in the world suffer from disease or watch their children suffer and are not able to obtain medical care. There are a few other positives: we saw an ENT doctor on Tuesday who evaluated Pearl and recommended that he put tubes in her ears at the same time she had our first lip surgery to release the fluid build up caused by her cleft condition. This same specialist was consulted to do the procedure necessary to take samples next week for the TB test. He remembered Pearl and offered to go ahead and put her ear tubes in at this time, so that is good news. Also, our attending physician for this hospital stay will be a man David knows and got to know well on his trip to Ethiopia last year.
We have received many comforts during this time which encourage us to continue to see how well cared for we are. We are also being forced to see even more clearly how vulnerable our little Pearl is and how glad we are that the process to get her was accelerated at every turn. We are so grateful she is home with us!