Thursday, December 15, 2016

Here he comes...

This morning, little Rowan passed away.  His dad and siblings made the trip from Texas to Seattle just a couple of hours before he passed.  It has been a battle for this family and I feel sad, very sad.

This boy inspired more Faith, Hope and Charity in the light he spread to others just by being himself, than most sermons I've heard.  He was chosen to carry a special message to those who knew him,  I believe.
Rowan Windham- Image: Carrie Windham, Nicole Shen
I love this poem by Henry Van Dyke...I love how he blurs and softens the edges between life and death.


For 20 plus years, we lived with the clinical picture of Shwachman Diamond Syndrome until the gene of Dyskeratosis Congenita was found.  The two diseases masquerade as one another so it was a long road to the discovery.  I never take for granted, the fact that my kids have done so well.  I know that the situation can change quickly and without warning.  In some ways, I feel guilty that I get to have my kids so close and so healthy compared to the short 10 years, Carrie was able to have Rowan.

I have received the majority of Shelbie's bone marrow biopsy reports back and other than another drop in the number of cells her marrow is producing, it looks stable.  No cancer.  No lymphoproliferative disease, no myelodysplastic changes.

I received a call this morning from the Cardiologist.  They were able to pick up on all of Spencer's recent heart events even though the computer hooked up here at home seemed to be malfunctioning.  I told them we hadn't started the Cardizem because I didn't have a good feeling about it.  He said he was very relieved that we hadn't started.  It would have lowered his blood pressure and it could have had detrimental side effects.  I am so grateful I was in tune to know.

They are getting a little closer to understanding what is happening to his heart, they believe it is mostly due to a poor functioning nervous system.  In addition, he is having electrical issues and one moment his heart is too slow, the next it is too fast and in between it flutters and stalls.  They confirmed that the one medication he is on is not causing his chest pain, his heart is causing his chest pain and that worries me!  They are going to continue to treat the Bradycardia, as they would rather he suffers with a fast heart rate than an extra slow one. We will not treat the Tachycardia at this time.  He told me his heart makes abrupt changes that they rarely see so that is confusing them.  They had one episode show up where is heart went from 45 bpm to 175 bpm without a steady incline  as you would expect.  That is worrisome.  He hasn't  been physical at all for two weeks or more because he has been not feeling well.

He assured me there are still things they can try to get things back in order.

Shelbie is having another rough time with a swollen, hot to the touch leg again and very high blood pressure just as she did prior to her stroke.  I kind of feel sick over it.  This afternoon, she had to lay down because the room wouldn't stop spinning...again, another precursor  of the stroke last month.

It's been a hard week!

This morning though, Spencer and I made it to the temple with three family names to do!  It was a peaceful time despite the rocky rest of the day.



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