Good Evening everyone,
I wanted to give you a quick update. Addie is doing well – her lung continues to drain, and she is feeling much better. The fluid being collected is chyle – but they want to know if there is anything else mixed in with the chyle. They are suggesting Sirolimus – which is a common medication used with children who have lymphangiomatosis to prevent fluid build up in the lungs. The Sirolimus will also help slow the amount of fluid entering the lungs, but this could take weeks to accomplish.
Today we faced time with Addie for more than an hour. She visited with all of us and then spent about 30 minutes with Anna.
Ryan said that Addie is keeping the nurses and doctors on their toes with all of her questions – which have been many. She does not let anything get by her. I am so proud of her for her attitude and spirit.
Friday – before Addie was med-jetted we spent some time reading about both lympangiatmatosis and Gorham’s disease – it was information I had read before, but it was good to read it with Addie. I think we are both more prepared to be more aware and honest about what is going on, and being more proactive is our new move.
We hope to have more information tomorrow on what the future holds. I will keep you posted. Michal
