Wednesday, November 2, 2016

Hard to complain

It's hard to complain about anything in this hospital...Well, it is plenty easy to complain but you feel rotten doing so when your neighbor is facing an uphill battle and weeks on end of being a patient here.  We really have nothing to complain about.  I am fully aware of the fact that things can always be worse!  We have yet to experience anything quite like some of the suffering I see here.

Shelbie had an alright day.  She had a biopsy today on her arm that is streaked up and down with petechiae and some of that has spread onto her chest.  Her IV infiltrated  today which only adds evidence to the mounting problems with her vascular system. They haven't even been using her IV the past two days so it's only had saline through it.  The hives on her other arm are angry and sore.

The MRI she endured last night only showed that her right leg is larger than her left.  There were no hidden clots. The swelling and pain remains a mystery of sorts.

Tomorrow, they will do a very fragile and specific blood test on her platelets.  She has to be fasting and people from the specialty lab at the U have to come to her room with controls, draw her blood and carefully walk the samples back to the lab.  They can't be jostled or messed with in any way.  Good grief...It sounds like a million things could go wrong to end with a false reading.

After that is over with we get to go home.  Our doctor was so apologetic that we couldn't leave today.  I could see how much it pained him to say that.

The plan is to increase the plasma transfusions incrementally.  The hope is that it will calm down all the inflammation she is experiencing her vessels and slow the progression of the growths in her lungs.

We were hoping to see her Cardiologist today to review the growing problem with her tricuspid valve but he didn't come and quite frankly, we are leaving whether he comes in the morning or not.

We had a good visit with Dr. Gundlapalli as well.  He is going to be consulting with an Autoimmune Neurologist because they have picked up on so many neurological problems.   They haven't spent too much time discussing the issue with the white matter in her brain.  The meylin is showing deficits and there is a theory that maybe, the nerves surrounding her vessels are becoming swollen and that is setting off these other issues.  Somehow, all these things that have fallen like dominoes this week seem so disconnected.  It's trying to sort it all out that is the issue.

Dr. G. said, "Shelbie, you probably don't realize how important you have become to this hospital.  You are educating the next generation of specialists and researchers."  It's true.  I can see the eagerness in the eyes of all the students and residents who pass through here.  One Fellow even commented that Shelbie is an example of the theory of John Hickam, a faculty member at Duke, called the Hickam Dictum.  His theory is that one person can have several unrelated diseases.

I'm not entirely sold on that.  our family seems a little ridiculous and we have gathered up far too many rare diseases but I also see his point.  Other doctors try to explain it all away with one simple boxed disease you just add water to and that isn't the answer either.

We have met some very nice people here.  All of the nurses have been great and the volunteers very kind.  One lady who volunteers here, came in and gave Shelbie a boxed set of Skull Candy headphones.  They brought in gift packages but mostly we've enjoyed the stories and visits.

The doctors have acknowledged that finding a way to live in a normal state is going to be hard.  Since there are still so many questions, missing details and blank spaces for what happened last week, what happened last December and the clot in her lung, they can't say when the next episode will happen.  They know they can't fix the problem, they can try to slow things down but there is no fix.  There is no way to know when it will happen again and to what degree and severity.

Again, I can see that God is wanting us to rely on him and only him.  He has put us in these situations that can only be managed with Faith.  That is both comforting and terrifying.  I have had to learn to live that way with Spencer, especially knowing that he is not on any heart medication for another few days and living with a heart that doesn't keep the steady rhythm that God intended. Every time he leaves the house, I have to focus on hope.  It's a hard way to live and now things just got a little harder.

Here are the highlights of today.

This was a service dog in training just outside Shelbie's window.  The trainer made her sit down with her nose to the wall while she went around the terrace hiding treats.  On command, the dog had to go and sniff them all out.  We laughed...she has a ways to go. 

Getting ready for the punch biopsy.  All that discoloration on her arm is petechiae.  It follows her veins and arteries which is interesting you can actually see the pattern of her vessels. 

While Shelbie napped for a bit, I stood up on the second floor and listened to the piano music.  So many volunteers keep this place classy.
 I was ready to drop today so I too went up to her room and flopped on the couch.  I was out and when I woke up, the room was so dark and I woke up crazy!  I couldn't remember where I was and why Shelbie was in a hospital bed across from me!  That's what happens when you don't get enough sleep and then too much all at once!  

 Another day comes to an end.  Shelbie got to facetime with her little sister tonight, her dad and the boys and even her cousin so that was good for Shelbie to connect with family.


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