Friday, April 29, 2011

Home & Waiting

Keegan came home late last night.  He had some significant bleeding and pain from the biopsies, and he didn't sleep too well.  Today showed an improvement in his energy levels, if nothing else.  He had labs drawn this afternoon, but we don't have results from them yet.  At the moment, he is sleeping fitfully, and it's difficult to tell whether it's related to pain or bad dreams.

The scopes showed some irregularities...of course, just not in a way that tells us what's wrong initially.  There were many parts of his colon that were irritated and inflamed, and one part in particular, the cecum, looked the worst.  The doctors took many biopsies of the different areas.  It was a non-specific irritation, meaning basically that we don't know what, if anything, it means until the biopsies come back.  Based on Keegan's history, we can anticipate that even the biopsies may not tell us anything definitive.  Just  another piece of the puzzle.  You can read the link I included by clicking the word "cecum" above, and if you know anything about Keegan's mucousy diarrhea/pain/fast transit/etc, this finding has the possibility of telling us something.  Still, we are not pinning all our hopes on it.  To make matters more complex/interesting, the cecum literally sits right in front of the right kidney.  Keegan's right kidney is significantly larger than it should be, since it has taken on the burden of his non-functioning left kidney.  We are unsure if they have anything to do with each other at this point.  Another puzzle piece.

The initial biospy results should be back by Monday morning.  Electron microscopy will take longer.  We have a few things to discuss with our transplant team, but the only remaining test we could run here would be a CT scan of his abdomen.  It might not be a bad idea at this point, but we will see what the general consensus is by next week.  Barring that, we will start talking to our team in Boston and possibly a group in Cinicinnati next week once the biopsies are back.  We know that this trip is 99.9% likely, and we'd like to get it over with fairly soon. 

That's about all I know right now.  Keegan was supposed to go to cardiac clinic in addition to his normal appointments next week, but due to some scheduling conflict, that has been rescheduled until the following Monday.  As for now, we are just waiting.  Like much of our lives, just waiting to see what we will learn or what will change or what we can do.  We appreciate so much your support the last few days and during this trying time.  Thank you, thank you.  More as we know more.

In the morning, Lord, you hear my voice;
in the morning I lay my requests before You and wait expectantly.
Psalm 5:3

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