We have made it without any new surprises! What a relief. Ryleigh’s pain is being managed. She is much more comfortable and is less irritable. We requested that Ryleigh have a more quieter atmosphere. Loads of doctors don’t crowd her room now. We have lots of discussions in the hall.
Ryleigh’s care is being looked at by a variety of specialized teams and there are often communication issues not for any reason as she has various problems and it is difficult to get everyone in the same area to collaborate.
We counted and she has 10 different medical teams looking at her. Can be a little confusing keeping track of things….but they are trying their best to be accommodating.
Today there is a big team meeting where they are meeting to discuss Ryleigh. One of the doctors is going to see if I can be included.
Ryleigh will be on intravenous blood thinners for at least 1 more week and then moved to different ones. They are not sure what to do with her clot as the traditional medication used to break up the clot she cannot have because she is at a high risk to bleed out. So they are now thinking about doing vascular surgery to remove it. However, they don’t typically do this here. So the specialist at VGH is looking at her results and see if they have the small enough tools to do the surgery. They will let us know in the next day or two.
Her GI doctor said that in the last 20 years she is only the 3rd child with IBD to have had a clot. Very interesting indeed.
Will post after more information when I can.