Saturday, May 25, 2019

All clear so far

I came in from the Ronald McDonald house this morning and luckily the resident came in right after me.  He told us that all the labs, and tests came back negative and clear.  There is nothing out of the ordinary.  Perhaps all the walking around and returning to normal is working itself out through a fever.  The back pain could be from laying on a flat MRI table for a hour.  They said you can expect fever up to 5 days post-op. 

We are waiting for rounds sometime around 10am or so to occur.  Then we will hopefully have a better picture of what moving forward will be like.  The resident this morning asked me my thoughts on going home with belly pain of a 5 or 6 out of 10.  I told him i'd have to run it by my nurse wife when she wakes up (from the uncomfortable couch bed) but I mentioned that we intended to stay 2 days locally at the Ronald McDonald house before jetting back home.  It makes me think we might get discharged soon with those kinds of questions.  Of course, we'd have to have a protocol for how to manage it, and when to come back./

I'm probably not explaining it correctly, but with the lymph system being one of the bodies junk movers (fat, and waste) as it returns to normal, it too is figuring out its new normal.  Dr. Dori separated the lymphatic system into the top half of her body and the body half of her body.  Now that the bottom can't flow into the top things are settling out and pooling in her lymphatic system as it learns the new normal.  A good bit of this can go to the stomach, and the body reacts to it kind of like an infection and that is why fevers can occur.  In the upper half of her lymphatic system there is all sorts of weirdness from her special lymphatic network.  Dr. Dori glued a good bit of the bad areas to prevent the upper half of her system from pooling into the lungs. 

I finally have time to post this, but we got to capture some images from Olivia's MRI. It is some interesting stuff, and very confusing at the same time.  When you look at this image you should notice how the lymph system looks below the green line.  This is where it is nice and lined without any leakage.  If you look at the top half you can see where things are leaking as it gets cloudy, instead of clean lines.  The contrast just kind of comes out and spreads around, if it was contained in the lymphatic network it would not do this.  At the top right is where her thoracic duct is support to connect to the inominate vein in the neck, but she does not make that connection.  Instead the lymph just kind of pools at that top right spot and leaks back into the lungs.  He placed a lot of glue in the upper half network to try to close some things off. Medical science doesn't know  a lot on the intricacies of the lymphatic system, but somehow the body will work around the glued portions and still find a way to perform the duties a lymphatic system should.  Hopefully we only need this procedure once, but sometimes you might need it a second or third time.  Dr. Dori did feel like he got it all, but unlike with a heart catheterization they don't go back and double check.  It would be too hard on the body to check after it is done. 

I also now have time to post and was able to make the last 2 or 3 blog posts.  I backdated them.  I apologize for not keeping you guys updated.  We do really appreciate all the thoughts, prayers, love and support.  Olivia knows she is loved back at home.  We have had several tears over missing her brother and sister, and she is definitely done with being here.  However, all the facetime's we have done and all the help back at home is making things bearable.  We can't thank everyone enough! 

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