Wednesday, June 16, 2010

"God does not give grace for the imagination. When you imagine your worst case scenario, you never imagine God's grace in that scenario. God gives grace for today."

Thank you for the continued outpouring of love and generosity for Ethan -- it certainly appears as if he is responding to all of the prayers!

In the past 24 hours, he has started to look, act, and feel much better. We are really dealing with three issues: 1) the acute sickness of the blood infection; 2) his GJ tubes and gut-related stuff; and 3) getting a diagnosis of what is actually wrong. I'm pleased to say that the terror of the blood infection sickness seems to be passing, and once we move beyond that, we can again begin to focus on the larger issues. His blood sugars are still fluctuating (low of 60, high of 400 -- so still serious) and there may be some issues with his central lines that we need to figure out, but his blood pressure, oxygen, heart rate, and temperature are all settled to where they should be.

Because Phoenix Children's Hospital has done literally everything they can, we need to get Ethan to another hospital. As I stated in an earlier update, we know people in St. Louis and they also have one of the top cross-speciality diagnosticians in the country (who they actually call "House" because of his ability to diagnose problems in children that others can't). It seems to us and all involved that this is exactly what is needed.

"House" is currently reviewing Ethan's medical records, and is hoping to have a diagnostic plan by early next week.  I spoke with him on the phone today, and he was asking questions about Ethan that ensured me that he already has a keen focus on Ethan's issues.  This means that we may go to St. Louis on Thursday of next week. The antibiotics Ethan are on are very specific and need to be given every six hours, so we will have a window for travel. Fortunately, our church has stepped up and is helping us coordinate his transfer through the efforts and generosity of other church members.

Like everything we seem to be facing, all of this is subject to change. We are still waiting for insurance pre-approval at St. Louis Children's, and Ethan will need to continue to have negative blood cultures and a central line that can stay in and not need to be replaced.  The unknown of all of this remains one of the most difficult aspects to handle both spiritually and logistically.

Many friends, family, and church members have remained very flexible in helping out at a moment's notice -- which is happening frequently enough that we feel guilty about the burden we're requiring others to take on. Thank you seems like a currency that will only take you so far, yet the help keeps coming. There are many that we have met in the hospital without the same network of helping hands and prayers and it is evident, and I don't know how we would do it.

We have been told that due to his intestinal issues combined with his central line makes for a bad combination for blood infections, so we pray that we will avoid another experience like the past several days, and will get to St. Louis with as little fanfare as possible.

If I could foresee all of what we have gone through when I was 20 years old, I wonder if I would have made the same decisions. Yet here I sit terrified for my son and I wouldn't trade it for the world.  The stories and lives and help and friendships and love that have been woven together over these past months tell a far deeper story of purpose and plan that truly goes beyond anything that I could ask for or imagine, or foresee. I'm learning to leave the foresight to God and worry more about my relationship with Him right now.  Foresight or imagining the future only matters if I could do something about it, and it has been made evidently clear that I can't.

So, with today in mind, I ask for prayer for Ethan that this today is the best today he ever has . . . until tomorrow!

God Bless,



  1. Hi we don't know each other but I am a friend of Jason and Kristi Cornell. I just wanted to give your family a big giant virtual hug and tell you that I am thinking about sweet Ethan.

  2. Hi Matt and Robin,

    I'm checking your blog about 12 times a day to see if there are any updates on Ethan. We love you all and are always thinking of you and praying for you.