What a couple of days it has been! Ethan is a child who rarely cries, and after all that he has been through, always greets you with a smile and a wave. But not these last couple of days -- his pain and sickness are readily apparent. His suffering has taken a toll on him and a toll on the hearts Robin and I. He cries or whimpers a lot, and it's difficult seeing all of the tubes coming out or going into him all over the place.
The doctors are continuing in their struggle to maintain blood pressure, heart rate, and oxygen, and we are fighting against a very aggressive bacteria in his blood. A typical blood infection can take up to 48 hours to culture -- Ethan's took only four. This means that it's aggressive, and his body shows it. He is filled with fluids to maintain his blood pressure, and keeping his fever down has been a constant challenge.
There is an immediate need to get this blood infection under control, but once we do, we have some good news. Through my sister Cheryl and her husband Dave (it's not what you know!), we have been in contact with some excellent medical staff in St. Louis who are currently reviewing Ethan's medical records, and pending insurance pre-approval, is where we will be taking him as soon as we can get him stable. I'm sure that many people have had good experiences with the overall medical care at Phoenix Children's Hospital, but we are not those people. Aside from great nursing, we have not been impressed, and it's time to "get out of Dodge".
I remain amazed that our other boys have held up so well -- the support of many of you has surely helped. Unfortunately, our chaotic lives have become somewhat normal to them, which depresses both Robin and I a bit. And we fear that their summer break won't be as memorable as some have been -- but that's small change in the bucket all things considered.
I just want Ethan better, and I have never wanted something so much and felt so helpless to get it. Just a diagnosis would be nice. And he just can't catch a break -- if something can happen, it seems like it does. But onward we press, trying to balance work and day-to-day living while dealing with the insanity of uncertainty.
So our prayer is now this -- that Ethan would be healed from this infection, stabilized and safely transferred to St. Louis. Of course we also dare to pray boldly that indeed a miracle would happen, and that God would work above every ordinary mean to heal Ethan completely.
Thank you friends, family, church family, and those near and far who have reached out in various ways big and small but all important and just as we have needed. I fear that we have asked many for too much, often receiving more than we asked for, and it really is beyond my understanding why so many have given up so much for us. Perhaps it's the best argument for the existence of God that can be made.
Until next time. . . . .
God Bless,
Matt
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