Tuesday: A Diagnosis

 So we are settled in at the hospital for Sophie's few days of testing. We arrived at 10 am this morning and after some confusion about where we were supposed to be (apparently it's tricky to do a CT scan AND a bronchoscopy at the same time, as one is usually done in the radiology department and one is done in day surgery), we finally got called back at 12 noon (her procedure was scheduled to START at noon!). One of our pastors, Pete, came to pray with me and Sophie before she went in, and Robin came to be with us for the morning too. Wonderful, supportive friends!

We finally got into a prep room and signed papers, got her vitals done etc. The doctors and the anesthesiologist all came by to go over things with me. I thought I'd get to go with her while they sedated her, but I wasn't able to. It was very hard seeing them take my little Sophie away! Thankfully they sedated her with gas and only then did the IV and all the other poking.

After only about 30 minutes, Dr. Popler, our pulmanologist, came to find me and told me it was all over and that Sophie had done really well during the procedure. Structurally she looked perfectly normal except for an extra branch in her lung, which doesn't do any harm and about 20% of kids have it. And then, the moment I had been waiting for!! He told me he HAD seen the ground glass opaciaties that are characteristic of the rare lung disease they were testing her for: Neuroendocrine Cell Hyperplaysia of Infancy or NEHI for short.

So. We have a diagnosis. Will share the story of why we suspected this in another post. The doc told me the opaciaties were very slight, indicating that her case was mild. There did not seem to be any inflammation or infection associated with this in her lungs.

You can read about NEHI here: http://child-foundation.com/education/NEHI. It is rare, has only been labelled as recently as 2005, and there is no cure. However, children seem to grow out of it, and it can be treated with oxygen support.

All ready to go back to get her anesthesia...thanks for helping me Robin!


 

Another friend, Ruth, came by for a visit this evening.

A bit dopey after the general anesthetic! She is a champ!

Doing her sleep study

Tonight we are doing her sleep study, to see how her body responds when sleeping (snoring, loss of oxygen, obstructions in the throat etc.) She is also having blood work, a stool sample and a PH probe study done while we are here.