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Today's events

Today has been an alright day.  I got very little sleep last night; tossed and turned and maybe got 2 hours in.  I haven't been too tired today which is surprising, mostly restless.  I have had to take a lot of walks.

This morning, we went on a little walk up to the cafeteria for some lemonade and we wandered the halls looking at the art.  Huntsman's has amazing art down each corridor.  It's more like a gallery than it is a hospital.  While we were walking, a whole group of church members were walking down the hall we were in.  They were very friendly and asked if we were planning to go to church.  I wanted to go but Shelbie had to get back to her room for rounds and more testing.  They said they would come to her room.  A little while later, they did come and read a thought and blessed the sacrament for Shelbie and her dad.  I decided to go to the meeting upstairs.  They asked me to give the opening prayer.

I felt very strange in my animal print leggings, converse and oversized sweater.  There were only two other patients there and they were in their Sunday best and the rest were members of the hospital branch and missionaries.  It's been a long time since I felt such an incredibly strong spirit in a church meeting.  I couldn't even get through the prayer, the songs...Before it started a gentleman came up to shake my hand and sat down to find out what we were doing here.  I shared our story.  He happened to be a physician and was telling me what he thought Dyskeratosis Congenita was.  He was right!  He is retired because he has a rare eye disease and he is almost blind.  I had no idea just talking to him.  He shared some amazing stories with me before the meeting started.

Church was just 30 minutes long but I missed rounds and got back to her room just as they were getting ready to start an EEG on Shelbie.

They told us that Shelbie won't be going anywhere for at least another 3 days or more.  They are perplexed because there is one test she has had twice and both times, the results were inconclusive.  They did it on Friday in clinic and told me it was textbook normal.  It is an ultrasound of her bad leg.  As they run the ultrasound over the veins, they press really hard to compress the vein so they can see any clots.  If they are unable to compress the vein, it usually means there is a blockage.  They ran the test again on Saturday and again said, "Textbook normal."  But the team doing rounds said it wasn't textbook normal because they still can't get that vein to compress!  So, now, they are going to do an angiogram to see why there seems to be a blockage.  I think that will happen tomorrow.

Also today, she had a brain MRI and a CT scan of her brain and they injected dye into the vessels in the brain.  We don't have results on those tests yet.  Shelbie also had an EEG and again, no results yet.

The neurologist came in today.  He was a little frustrating.  He asked her to repeat for the one millionth time what took place on Thursday night.  He asked her a million questions about the vision loss, falling over etc.  The event was not proceeded by anything strange, no warning signs.  Her vision didn't dull, it just shut off like a light.  There were no odd things after either.  It's almost identical to what happened last December.

He thinks it's unlikely that she had a stroke.  He thinks it is something like a complicated migraine or syncope and she just fainted.  He even suggested she had a seizure.  The symptoms for any of those include, cold sweats, clammy skin, racing heart, palpitations, auras, pain, tunnel vision, extreme headache that lasts for several minutes to hours.  Shelbie had none of that and her event didn't last long like the others would have.  She has had seizures plenty of times before and this was not a seizure.

Yet, the guy began by confirming she has a history of pulmonary embolism last year, had a neurological event 11 months ago, has an extremely sore and swollen leg, 3" bigger than her other leg.  Today her entire right side is swollen.  Plasma comes with a black box warning for blood clots and she has been on that for 3 years now. Her INR is low which means her blood is a little too thick and they are giving her blood thinner shots to remedy that.  Her vision shut down, didn't tunnel and that is the hallmark sign of a stroke. She fell to the right side with right side weakness, another hallmark sign of a stroke...yet he pulls out these total wild cards of migraine, syncope and seizures.  The deck is stacked for stroke but he is going rogue.  It upsets me because we can't afford to be misdiagnosed.  This could be incredibly dangerous if they don't get this right.   The rest of the team all feels like we are hunting a bigger clot which is why they won't let her go.  This morning, they were very perplexed with the right side swelling.

All the same, they may never be able to find the source of the problem.  The clot probably wasn't big enough to cause vessel damage which is why they can't find any evidence of a clot passing through her brain.  The team is testing her for 11 different diseases that can cause symptoms of a stroke.  They drew that blood today.

This afternoon, her blood pressure has been quite low, she's been a little tipsy on her feet and pretty nauseated.  I'm guessing the nausea is from all the contrast they've been pumping her full of.

She is doing well emotionally all things considered.  Her dad's friends came up to visit and that cheered her up.  We will just have to continue to be patient and see what comes up tomorrow.  It will be another busy day.

I'm hoping to get some sleep tonight.  I'm still sort of fighting a cold and nausea but, life goes on and it can always be worse.



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