Tuesday, November 1, 2016

Day 5

Things are finally falling into place.

This morning, Dr. Shami came through with his team and it was a great visit but emotional as well.  I felt so much gratitude that God blessed us with Dr. Shami.  He has definitely been an answer to prayers and today, I let him know that.  Each conversation we have with him, another piece of the puzzle is uncovered.

So, here is today's run down.  The case for a rare arthritis of her arteries is even stronger.  She is now covered in hives so they have discontinued anymore tests with contrast and even CBC's have been discontinued.  Every time they do anything with her veins and arteries, she has an 'event'.

This morning, she experienced some abnormal bleeding in her gums, lots of blood!  Her arm is covered in Petechiae as well, just from the blood pressure cuff.  Dr. S looked at it and I said, "Oh, don't worry about that, it happens all the time!"

He looked back at me and said, "It's not suppose to happen at all!"  I always just thought it was a vasculitis kind of thing because of her hypermobility and connective tissue problems but he said it almost always means her platelets are not functioning.  Her platelet count has been dropping since we got here but they are still high enough, we shouldn't be seeing petechiae.  They are calling in some docs who specialize in platelet disorders.

One of the things that has been throwing off the docs is the fact that her inflammatory markers keep coming back normal.  They consulted with our Immunologist who follows Shelbie and her ITP and CVID and he said that the plasma she receives changes the results on the inflammatory tests so those results can not be relied upon.  Our immunologist agrees that we are looking at a rare arthritis of her vascular system.  We are hoping to see him today or tomorrow.

They also found that the tricuspid valve in her heart is getting worse and there was more regurgitation on this past echo than there was last year.  That is a worry as well and they may start considering a repair of the hole in her heart since it is starting to create problems in her heart.  We will hopefully see our Cardiologist today as well.

They think they have done all they can for Shelbie in determining what happened.  We need to wrap up a few tests today and hopefully, they will let her go home tomorrow afternoon.

They have told Shelbie that she can't drive for two months, she isn't even allowed to take a bath or shower alone for two months.  We have to address the problem with the stairs in our house.  They are concerned about her going up and down them, especially since they aren't carpeted.  Her bedroom is in the basement as well as her studio and there isn't a bathroom down there either so she is always up and down.  I'm not sure I can afford carpet or to put in a bathroom so I offered to give her the master bedroom on the main floor and there is a big master suite she could have as well.  She doesn't love the idea but I think it's the best option we have right now.  We will continue to think this through.

Side note...my basement has been getting water in it since I've been down here.  The boys were kind enough to not tell me and just take care of it.  Spencer had to pull back the piece of carpet just laying there because it was soaked through.  The water is coming through the front wall of my house so it's not going to be an easy or cheap fix!  Arghhh, another reason I don't want to finish the basement with carpet and a bathroom.

Anyways...

As far as treatment goes, she has to continue on the blood thinner shots but it creates a very complicated situation with her platelets and ITP and now, abnormal platelet functioning.  It will protect her from the tiny clots caused by the Arteritis but it is making the other issues worse.

I think they are going to increase her plasma transfusions and possibly add a strong drug to shut down her immune system...I'm wondering if it will be a chemo agent like we have had to do in the past.  Time will tell.

The doctors and nurses are continually commenting on how complicated and difficult Shelbie's case is.  I am starting to feel like I might need to consider moving closer to the hospital here.  I don't see how anything is ever going to get better...just more progressive.  It's an overwhelming thought at this point.  Everything is sort of overwhelming.  I need to find a different job for sure.  I have missed the bulk of my income by being here this past week and we have to come down every week until Mid December!  It's starting to feel like a lot for our little family to recover from.



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