Tuesday, August 18, 2015

Out of the blue

Yesterday, I received in the mail, quite by surprise...

This book.

Diagnosis and management guidelines for Dyskeratosis Congenita.

I didn't order it.  I didn't even know such a book existed.

It is no less than 438 pages of information regarding the disease my kids have.  There is not another book of it's kind.  It was written by 40 of the top researchers and providers of care for DC kids/patients.  It is complete with references to studies and articles.

It's pretty amazing.  I am seriously amazed.   In awe.  Overwhelmed in fact!   This is worth it's weight in gold!  I can't even imagine the work it took to get this compiled.  It takes a lot for me to be moved like this.

It was out of the blue.

The other thing that came quite by surprise was a phone call from our GI doc in Boise.  Just a few minutes ago, his nurse called and said that Dr. T has cleared out an entire day for us to bring the kids next week!  Next week!  He's going to see my kids!  I'm so relieved.  This will be the last time but I love this doctor and I'm so glad he has taken such great lengths to care for us.

His nurse literally said, "He has cleared out the entire day so you can choose any time you want to come and see him and he will spend whatever time it takes."   That has never happened to me before...ever!

We haven't seen him in three years but this is why I love him.

When Sam was just 15 months old, he was all sorts of sick and failing to thrive.  We had already gone the run around with Shelbie and Spencer at Primary Children's GI and Toronto for Sick Children, who, at the time was the end all and be all of SDS research.   They had messed us up which is a long story in and of itself.

By the time Sam arrived, we had gone two years without being treated for pancreatic insufficiency.  Our family doctor knew we needed to find out what was wrong and he mentioned this brand new doctor in Boise who might be able to help us.  It was Dr. Thompson at St. Lukes.

On our first visit, he recognized some serious problems with one of the kids whom shall remain nameless because it's a TMI kind of story.  This child of mine had to have an enema while on our first visit.  After a horrendous amount of time, the child unloaded in the bathroom at the hospital.  I got Dr. Thompson to let him know we were done and he came into the bathroom, pulled on some gloves and began to fish around in the toilet bowl, literally sifting through the remains from an enema!

To say I was shocked would be a blatant understatement.  I stood there in awe!  I said, "Why are you doing this?  Don't you have people to do this for you?  What in the world made you want to do this specialty?"

He looked up at me as he crouched down beside the toilet..."It's fascinating!"  Just then, his pager and hospital ID started to fall from his shirt pocket, headed straight to the toilet.  He caught it with his free hand!  Then he looked at me and said, "There's never a dull moment!"

In that moment I thought, "This guy is a keeper!"  He's truly been a team player and listened with empathy to the kids and to me.

I am pretty sure it's all been orchestrated by God himself.  I have been so stuck lately, not really knowing what to do so I have done nothing.  I just kept praying that I would be led to the next best thing and I would figure out what to do about our doctor dilemma.  It has all just fallen into place.

So, Oncology and Gastroenterology all next week and bone marrow biopsies will happen if not next week, then for sure the following week.

These are some major appointments and all that is left is cardiology, pulmonology and ophthalmology and a sneaking suspicion that all three will be going in for baseline colonoscopy testing and one more appointment for Sam to see the Urologist.  It's a lot left to do but we can manage.  We've had a nice little break from the fray.   Time to get things taken care of.


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