Monday, October 31, 2016

Day 4...

It has been a frustrating day but I feel like maybe we are making some headway in getting a diagnosis.   At least it feels like the wide net they cast has been narrowed down a little.

The morning kicked off at 4:00 am!  The sofa in her room is plenty comfortable but the most I can sleep is 2 hours, maybe 3.  When they came in for 4 am vitals and bloodwork, I went to the family bathrooms for a shower just to beat the morning rush.  I came back to her room a half hour later and answered some emails, did a little work and then took a nap at 7.

We didn't have to endure the whole rigmarole of rounds with a dozen residents, fellows, attendings etc from all different specialties.  I was pleasantly surprised when just our doctor came in.  Our good old Dr. Shami. He is a goldmine of intelligence to me.  He had some students with him but I didn't care about that, we finally had some continuity of care and tomorrow we might get to see our Immunologist Dr. Gundlapalli, another one of our favorite docs.

It's frustrating here because we have been getting some mixed up messages.  Yesterday, the Neurologist said the brain MRI was "Stone Cold Normal".  This morning, I asked our doctor about that and he said it wasn't normal at all.  The MRI showed that there are abnormalities in the white matter.  Her brain looks like that of a 70 or 80 year old.  She doesn't have the brain of a 24 year old girl.

White matter in the brain is where the myelinated nerve bundles live. It's responsible for nerve impulses, communication between the two hemispheres, co-ordination, perception, memory, motor skills and a few other important things we need to function.

When our doctor said that, I wanted to shrink into my pocket and pretend I no longer existed.  Shelbie had terror and shock in her eyes but a crooked smile on her face and nothing in that moment seemed real.  I don't even know how that could be unless it's a result of the short telomeres.  I asked that question and he admits he isn't sure but it seems plausible since shortening telomeres is what causes us all to age.  It's just that we are suppose to experience aging when we are 60, 70, and 80, not 24.

The reason this finding is so incredible is because last Wednesday, when we saw him in clinic, he had mentioned that since we had seen him the previous month, he had thought about her issues and felt like maybe we needed to start investigating an issue with her myelin.  Interesting, but I didn't go any further with that in my head and I think to him, it was something to investigate down the road.

He also mentioned about a rare disease he studied in two patients with CVID who had similar symptoms of stroke as Shelbie.  They had a rare, extremely rare, arthritis that affects the major arteries in the brain and the aorta and when it flares, it causes the artery to clamp down and stop the flow of blood which results in a stroke like event.  It can also include clots.  He said he wanted to investigate that further with more tests and a consult with a Rheumatologist.

The Rheumatologist came in about an hour later and after her exam and history gathering, she said the first thing she thought of was a rare arthritis of the arteries!  The very same thing Dr. Shami thought.  She called it Takayasu Arteritis.   I have read up on it and it does sound like Shelbie.   She brought her Attending back a while later and she had a slightly different opinion but basically, it is agreed that Shelbie has a disease of the to narrow it down.

As much as it felt a relief to have some direction and narrow things down, it has made me feel sick all day.  Sick and scared.

Tomorrow, they are doing some big tests, angiograms, arteriorgrams, and more in depth study of her abdomen and lungs.  We were hoping it could be done today but no such thing.

The Neurologist came back in this afternoon and he said he is just so sure that what Shelbie had was just a fainting spell or a seizure since her MRI is so normal!  Bleh.   I just agreed and thanked him so much and then tore up his business cards when he left.  He plans to see her in three months.  As if...the girl has a clot in her lung...and two stroke like events, a leg that is swollen and worse today...and we are calling it a fainting spell?  No thanks...don't waste my time.

Physically, Shelbie's leg is more painful tonight than it has been and her blood pressure is crazy low!  For two days it's been 90/50, 90/40 and they eve had a 90/36!  Her heart rate has come back down from the low 100's.

We did have some good things today niece happened to fly into Salt Lake last night so she came up this afternoon and spent a few hours.  It was so nice to see family!!  She is just a year younger than Shelbie.

My cousin texted me this morning.  He had a bone marrow transplant a few weeks ago and is getting through his 100 days before he gets to go home.  He was here for clinics so he stopped by to visit.  It was really good see him but I know he felt some anxiety having to come back to the transplant unit.  We are in the room beside the room he spent a few months in.

Then, Spencer surprised us with a drive down to see Shelbie.  I miss the boys so much.  I can hardly stand it. My Wasband went home today.

Tonight, we are going to watch Halloween movies and shake off the day.

A view from her room.

This about sums up how Shelbie is feeling...Done!

Batman!  He has been our favorite nurse but today was the end of his week on duty.  FYI...He looks so much like my brother!!  It's a little freaky.  (You can't really tell with the mask on)

Shelbie and my Niece Kylie. 


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