Wednesday, May 12, 2010

"When all is said and done, there's more said than there is done."

To All:

It has been a while since the last update, and I left everyone hanging regarding the outcome of Ethan's progress as well as my mental health.  I would love to say that it's getting easier, but this has been a long process, and it doesn't look like it's going to be easily resolved and I think we're in it for the long haul.

Since the last update, I called a "Come to Jesus" meeting with the medical staff (formally called a Patient Care Conference) to get everyone on the same page. Luckily I was prepared with an agenda and a seven page document, because the doctors weren't prepared to lead the conversation. My general assessment after two months with Ethan in the hospital is that doctors are generally poor communicators and are not very business minded (an apology to all of our doctor friends who frankly have been better about following through with us than the hospital).

The result of the meeting was that we were going to stop doing procedures every two days on Ethan, and we outlined a plan for his care which all of the doctors agreed to.  With that said, Ethan had a GJ tube inserted into his side last Wednesday, in which one tube goes to the stomach (to drain content) and the other goes to his intestine to feed him (which seems backwards I know).

The procedure itself went well, but he has been in a lot of discomfort ever since and can't lay on his tummy where the tube is. The goal was to get four days of weight gain with this in place, and then continue treatment from home to try and figure out what his issue is. The doctors have confessed that he is an absolute mystery, and his symptoms present themselves in such a way that they can't even say if he has something common or something rare, so maintaining a direction of care is difficult.

To make a long story longer, up through yesterday Ethan still wasn't gaining weight. Yesterday, they changed his feeds to something called Progestimil which is easier to digest. Today he had weight gain, so three days to go!  The opening in his torso where the tubes go in (the "button") has been leaking disgusting fluid (that's as graphic as I will get for the faint-of-heart!) for the past couple of days, and is inflamed. We're keeping an eye on it to determine if he is simply leaking stomach fluids, or if it has become infected.  Hopefully he just sprung a leak and he will close up and be ok.

Every expert in the hospital has an opinion, and even after our meeting it has been difficult keeping them focused on Ethan's care plan without deviating.  But now that I know where the shortcomings of the hospital are (communication), I have been able to stay on top of them a bit more and keep them focused. I have been trying very hard to balance my Type-A personality with a calm and understanding demeanor. On days when I'm tired, that's much more difficult than when I'm rested and a bit more sane.  The "new" doctors on rotation today think he'll be fine to go home tomorrow with a low grade fever, oozing fluids in his stomach and only one day of weight gain, and crying in pain when he moves.  Though we would like to be home, we disagree with their assessment and we're letting them know in the most positive way possible that Ethan has a Care Plan, and that we are going to stick to that plan unless they can adequately explain why they are changing the plan (the elusive doctor-patient communication!).

I write this email on an airplane, with my other boys at our friends house.  It's difficult to leave town on work and carry on with business as usual when everything is so up-in-the-air, but life must go on.

I am learning that there are levels of trust in God.  In that learning, I'm realizing that there are a lot of levels where I don't trust in Him.  The deeper the levels, the less the trust, and that's not a discovery that I'm particularly relishing in right now.

Please focus your prayers toward Ethan gaining weight and staying infection free, and for Robin, who is really feeling the effects of her rheumatoid arthritis on the hospital couch (she still hasn't missed one night by his side).  Her health is critical to our family -- I've learned that I'm neither willing nor able to handle what she does every day.

As always, thank you, thank you, thank you. Our community of friends has come along side us and helped bear our burden in ways big and small and all desperately needed. And the prayers and emails have come from far and wide, and we feel the prayers and read all emails (though I'm starting to slip on responding to them, sorry!).

I keep telling myself that I'm going to start a blog for this, but still haven't gotten around to it.  Maybe soon.

God Bless,


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