Micah Update & TGI Child Life!

I just got off the phone with Micah.  He was busy having a nebulizer treatment so we didn't talk long. He has these treatments very regularly in the hospital and it's an important part of his health plan both in-patient and at home.  It's difficult to have a conversation during the treatment because he needs to keep the mouthpiece IN his mouth and it's very noisy over the phone.  So I'll call him back later.

His mood seemed pretty good though and it sounded like he had some company.  Kim from the Doernbecher Child Life program (click the link and scroll down to see her - third from the right & one of the best listeners I've met up there) was hanging out with him while he plays his guitar.  She's been a big part of our lives ever since Micah first started spending time at Doernbecher.  She has been there with us through some very dark times when Micah didn't have anything nice to say to anyone.  And when I was the last person he wanted to talk to - she was there.

One of the services Kim and her fellow staffers provide Micah is tools to keep him occupied.  I'm guessing most people don't know that Micah is usually under house arrest when he's at the hospital.  That is to say, he isn't generally allowed to leave his hospital room.  A few years ago one of his labs showed he had MRSA in his system.  Since this can be very dangerous to some, especially Cystic Fibrosis (CF) and cancer patients undergoing treatment, his germs need to be contained.  Hospital staff have to wear special gowns and masks anytime they enter his room and these are discarded as they exit the room.  This helps protect other patients from cross contamination.  His labs have been clear of MRSA for the last few labs but once it's in your file it is very difficult to get the hospital protocols removed.

So for years, every hospital stay, (which is on average two weeks long) Micah is not allowed to leave his room.  Can you imagine being trapped in one room for 12 days with nothing but limited cable and a DVD player?  That's sounds great to me - for about 3 days.  To a seventeen year old young man?  That's jail time.  So that's where Child Life and Kim come in. They'll loan him a laptop to get online, or an XBox or Playstation and movies and games to play and sometimes even a video camera with which he gets creative.  (More on those later.)  In the last few stays he has finally been allowed to leave his room as long as he wears a mask.  But he still has to stay away from, and out of the rooms of, CF patients which it turns out are many of the kids his age that are up there.  So loneliness is still a problem.  Kim and her team sure give it their best though and I for one have been very grateful.  It gives us something to do and talk about that isn't the elephant in the room disguised under all those tubes and wires and clicking and beeping machines.  Stupid elephant.

Micah Dron - It's Time to Talk

This blog is about my son, Micah Dron.   He is 17 years old and he has bronchiectasis .  My reasons for writing about Micah and his life are many.  Its a great way to keep family and friends informed.  Its a tool to help me process all that is happening in Micah's disease and treatment and all the thoughts and feelings that go along with it.  But at the top of that list is that the years allotted to him will be fewer than most people get and you may never have the chance to get to know him. And Micah is a person who should have a chance to be known.

Now, I'm no writer. So this blog will not be eloquent by any stretch. I will say things that might not make sense to you. I may vent.  I may yell.  I may cry or celebrate.  I may tell stories or just give information about the latest developments in his treatment.  It's hard to say. 
I am a Christian and you will see faith as a central theme in my philosophy but that does not mean I always play nice.  Terminal illness is mean.  Sometimes I am too.  I apologize if I ever offend with my choice of words or language. It's not my intent to be offensive, but to just tell it like it is.  Open & honest communication. Sometimes raw and sometimes painful, but very real.
Maybe our story will educate you.  I hope you find some comfort or redemption in these ramblings.  The best I could hope for is that someone gain from our experiences.  But in truth the most I'm looking to do is to talk about my son, Micah while he's still here.  Because my Micah is a rock star.