Wednesday, November 2, 2016

Day 6

Yesterday was a mixed bag.

They took Shelbie for her MRI at 5:30.  It was suppose to take about an hour and a half.  By 8:15, she still wasn't back!  I was getting really nervous as I watched the seconds tick by.  Finally at about 8:30,  they wheeled her through the door of her room.  I could tell from the look on her face, she was not okay.

We helped her into bed and she sobbed and sobbed.  3 hours in the MRI!  They had a very hard time with the test.  Interventional Radiology was overseeing things and they wanted to get it right.  Within seconds, her Aide was in the room and immediately picked up the phone for the nurse to bring pain meds. I was so impressed with their quick response.  I guess the guy who transported Shelbie ran straight to get our nurse when he left our room.

While she was gone, Dr. Gundlapalli came by to see her.  He is our Immunologist.  I love him as well.  He confirmed that we are dealing with a rare condition of the vessels.  Takayasu is the name.  He said there are a few different names that often get used interchangeably but they all mean the same thing.   The vessels become so inflamed and create tiny blood clots.  The vessel can become scarred, narrowed and diseased.  At times, without warning, it can clamp down on itself and blood flow stops.  The little clots can build up and you experience small strokes or, life threatening strokes.
He told me the treatment is going to be tricky.  For starters, with Shelbie's permission, they will increase her plasma meds a gram a week.  The second line of treatment is massive amounts of steroids.  Shelbie does not manage well on steroids so that will probably not be an option.  The third line is a chemotherapy drug, possibly Rituxan.   She was on that in 2010 and that was no fun but in the end, it did fix  her platelet problem.  Dr. G thinks that is going to be our best move but we need to think about that some more.

Dr. G said, "I am so sorry.  We need to watch Shelbie for PTSD.  This is not going to be an easy thing to live with and the fact that she had an event while driving alone is terrifying for me, I can only imagine how she feels."

Honestly, I hadn't thought about that.  It still hasn't really hit me how horrible things could have been!

He went on to ask how I was feeling and doing with all this.  I told him I'm tired and trying to figure out how we are going to move forward in making a living and taking care of my kids.  He said, "You need to keep yourself healthy and manage the stress better.  I haven't had a chance to talk to you alone but Dr. Shami and I were talking about Shelbie's case and we both agree that you are the sole reason she is alive today.  You have done your research, kept up with us and even a few steps ahead.  You questioned the process, put pieces together.  We needed your guidance.  Please take care of yourself."

That hit me like a sack of bricks!  Most days, I feel like I have one foot in the grave. I don't know how to manage the stress of three kids struggling.  My Wasband has really been helpful this year but it's even more than the two of us can always manage.  I know I need to make some changes with my employment but it's going to take some fresh courage and new faith to make that change.

Dr. Gundlapalli and Dr. Shami are worried about how to support Shelbie as her life changes a little and she has to slow down a bit, for awhile at least, and give up a little of her independence.  I am worried about that too.  I'm not a fan of depression and feeling sorry for yourself.  I don't want her to give up her business and stop altogether.  We have a lot to think about, a lot to decide, a lot of leaning on God.

I ran out to get her a Frosty last night after we got her back into bed.  She hadn't eaten most of the day and had to start fasting for her last big test today.  They brought her some food but it was horrible tasting!  While I was out, Sam texted me that he needed some help with his Financial Aid papers for college.  My heart took off racing and flip flopping.  I got dizzy and had to pull over.  I know it was just a run off of anxiety from the day.  I sat there a minute and took some deep breaths.  I need to stay focused on this moment, not a hundred moments from now.

I think we will be able to go home this afternoon or tonight.  I want to be home but it's nice to be in a place where I know she is safe.   Our dear friends bought us tickets to see the Bar J Wranglers on Thursday.  They were going to come with us but they will not be able to be there.  Hopefully, we will be home in time to still go. I know it will make the kids so happy to do something fun together.  So, that is our goal...get home and do something fun and pretend to be normal as we figure on a new one.

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