Good Evening –
A quick update – Addie and Ryan are still in Denver. Addie released a significant amount of chyle on Saturday, after releasing less than 400 ml’s on Friday, a set back that indicates that Addie will need to have the chest tube in longer. The Doctors continue to work together to figure out the best time and way for Addie to be released to care here in Missoula. They are looking into a flight called “angel flight” – to see if Addie can be transported that way. If they can get Addie a flight – they would clamp her tube – fly her to Missoula and admit her into the hospital here. She is doing well -stable, content, no pain, and ready to come home. Ryan too is doing well – we were planning on switching places this week – but will wait to see if she will be able to come home. I have been reading about other’s who have Gorham’s and lung involvement. Some of those diagnosed with Gorham’s or Lymphangiamatois say that there is so many similarities between the two that they should be classified as one disease. I have read about two other children with Gorham’s disease who also have the lung involvement with the production of chyle, and I know there are more. I ask questions, Where does the chyle come from? Why is the body producing the chyle? Very few answers. One of the hardest parts about trying to reduce the chyle production is that Addie is on a very low fat diet – only 10 grams of fat a day – The chyle is fat based.
We are keeping positive, contemplating the best way to live the future, and so grateful for our family, the prayers, and the wonderful people that surround us.