A lot has been happening

My apologies for the length of time since the last post. So much has been happening, mostly with Maya medically, that there has not been much time or energy left to blog.

Maya has been having several problems with her NG tube. Her skin is so sensitive to all of the adhesives used, as well as the NG tube material itself, that she gets an oozing red sore under the tape w/in a few days. Changing the tube to the other nostril weekly to alleviate the rash on one side temporarily solved the problem, but has stopped being effective as the interval now required to change the tube is to short to allow enough healing of the other side's rash. Also the procedure to remove/replace the tube is traumatizing to Maya. In addition, she has been developing aspiration (at least in part) based pneumonia due to aspiration of either foods, stomach acid or saliva, despite treatment with acid-blocking medication. The NG tube is a foreign body that does not allow for full closure of the spinchter at the entrance of the esophagus into the stomach, so it allows a path for acid to reflux back up the throat, possibly then over and down into the lungs.

To reduce the NG tube problems, we are having a P.E.G. tube/port placed into her stomach on Friday which will allow food/liquids access as well as samples of stomach acids via a port in her side. She will still be able to eat solids, but liquids will be through this port, just like the NG tube. At the same time she will have a bronchoscopy to examine her lungs and trachea to look for structural abnormalities and to test her mucous to see if they can find a cause for her continued infections.

In addition we have noticed, as well as her pediatricians, that she has significant bowing of the tibia, more pronounced near her ankles and this is happening at the same time her growth has slowed or stopped (since spring). Tests for Vitamin D deficiency have paradoxically led to a finding of an extremely high 1,25 Dihydroxy Vitamin D (Active form of Vitamin D), which can be caused by, in order of liklihood: Sarcoidosis, Tuberculosis, Hyperparatyroidism, hereditary syndromes and various inflammatory diseases. So far we have a negative skin test for TB, but that is common in children - a follow series of three day's of stomach acid samples will be upcoming via her port. She also has negative tests for hyperparathyroidism. Sarcoidosis tests will be performed soon, as well as genetic testing.

I have to run now, time to take Brianna to Taekwondo. Her are a few pictures of Maya's NG tube and rash:

-Chris