Saturday, August 15, 2015

Missing Pieces

I've been trying to get appointments for the kids set up but it's not easy.

Having to start over with all new doctors has been daunting.  I don't even know where to start looking for new ones.

I've been really bothered with the whole hematology situation. The more time I spend in the Dyskeratosis group and reading about the disease, the more confused I am.  We are one of the very few families who has not been to transplant yet.  In fact, one family is starting transplant very soon and their child actually has better counts than any of my kids!  I am continually told that it's better to transplant while they are healthy.  Once the lung problems start, it's too late to transplant.

We have never been told any of this. I feel like we don't have anyone looking at the big picture. Now without our top Hematologist and GI doc, we are even more lost.

I'm hoping I figure something out soon.  We could go to Seattle and meet with the new doctor Dr. Shimamura suggested we start seeing but honestly, the thought of going there and driving all that way fills me with dread.  However, she works closely with Dr. Shimamura and has been groomed to take over her transitioning patients so it makes sense.  We won't have to re-invent the wheel.  Still...that drive!

As far as GI...I have no clue where to go.  We need someone pretty fast.  Spencer keeps asking when he will start feeling better.  Without a plan...he isn't going to start feeling any better.

This is only the tip of the iceberg.  Yesterday was overwhelming as Spencer continued to talk about all the things that are ailing him.  New symptoms...All DC related.

Ahh...we will move ahead and I'm sure things will fall into place soon.

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