Monday, October 24, 2016

Boarding the Crazy Train

This crazy train we are on is gaining momentum.

It's hard to believe we are clear back to square one with Shelbie and the mystery disease but that's exactly what it feels like.

I texted our Immunologist this morning to see if he could weigh in on what he thought we should be doing with Shelbie.  I even sent him pictures of her swollen leg.  He was very quick to tell me that this was not normal and probably not cellulitis but he felt that staying on the antibiotics was the best thing to do until they could sort things out.  He contacted our Oncologist, they had a meeting of their minds and then gave me instructions to contact our Oncologist's nurse which I did.

Their feeling is that the enlarged lymph nodes in her abdomen and around her aorta have grown and are now putting pressure on her vascular system and that is creating the swelling in her leg.  They don't think it's likely a delayed response from her surgery earlier this year.  That could be and I thought about that last night but it still doesn't seem to fit.  And of course, whenever anything like this happens, they always go back and pull the Lymphoma card as another possibility.  That doesn't really seem too likely in my head either but it's hard to judge.

Shelbie managed to do two photo shoots today despite the ongoing and growing pain.  Her leg isn't really much better but she has kept compression pants on all day so it doesn't look as bad at first glance.

They went back and forth about having her admitted either here or down at Huntsman.  If that was the plan, I was really pulling for here.  I love Huntsman but we are little fish that drown in that overwhelming hospital.  We finally settled on going down Wednesday and they will run some scans and tests and see what is happening inside her and we will see our team as well.   After their assessments, we will decide on the next step.  It's anybody's guess at this point.

I'm hoping to be home late, late on Wednesday because I don't have anyone to cover for me at work so regardless if she is admitted to the hospital down there or I get to bring her home, I will be home that night.  In theory, we will be going back down again on Friday for Spencer's heart evaluation.

Not exactly the week I was expecting or welcoming and I really can't believe we are back to these issues again.  How disturbing.  Shelbie is in pretty good spirits but she is notably tired and in pain.

So, here we go...buckle up!


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