Thursday, January 29, 2009


Keegan has finally turned a corner early this evening. He had 5 morphine boluses and 4 loratab doses, but after his thrid nap today, he woke up feeling so much better. His incision seems to have stopped bleeding, and we clamped his g-tube and have finally heard his bowel starting to move again. We may try some pedialyte through his tube tonight. One nice side effect of the surgery, is that it caused a temporary paralysis of sorts in his GI system, giving his bum a much needed break from the diarrhea. He started sitting up this afternoon, and when Gray came up tonight, Keegan stood up for the first time. It's really nice to see him with his clean cheeks - a full smile for the first time since October!

We have a little bit of news from yesterday's procedures. We should have a final report by the beginning of next week. First of all, the surgeon noted that Keegan's intestinal wall was quite thin. This surgeon has done about half of Keegan's surgeries. He has seen Keegan's intestines during surgery when he was much younger, and he has done countless abdominal surgeries on kids. (Interesting note - Keegan has had 9 surgeries, 2 of which involved heart-lung bypass; 7 additional surgical procedures involving general anesthesia, and 6 more involving sedation.) We don't know what to think of this finding just yet. We don't know if it's a contributing cause to his symptoms or a result of his other GI issues. The surgeon thought it may be related to his steroid therapy and immunosuppression, but the GI docs don't think so. We'll see.

As for the liver, we are waiting final results from the pathologist. We learned that his liver (not quite ready to use the word "failure" yet; let's say "compromised liver function") is NOT related to his TPN, injury from ECMO, or a virus. The preliminary findings indicate that his liver may give an answer that encompasses many of his symptoms. The pathologist needs to do some further testing and staining over the weekend. Once we get the final report and learn more about it, we'll let you know.

We know that's a terrible cliffhanger, but we appreciate you trusting the doctors and us in sharing what we know. Thank you so much for walking this road with us. We really appreciate your prayers, especially this weekend as we wait in hope that we finally have an answer to help Keegan.

As many of you who have followed Keegan's journey in this journal know, my favorite prayer for Keegan is in Psalm 138, the Hymn of a Grateful Heart...and for good reason. The last week has been very difficult for me, as I allowed myself to despair about continued bad labwork, unhelpful scope results, and Keegan's increasing discomfort. I once again turned to Psalm 138, finding comfort in the words I've said so often for Keegan. Catholic scholars interpret the Book of Psalms (the Psalter) as a form of essential, innate, meditative prayer. Pray them over and over again, and the Lord reveals Himself in a reassuring, comforting way. For the first time last night, I kept reading past 138 (usually I stop, consumed with my thoughts of Keegan, medical reports, and our trials) and prayed into Psalm 139. It reassured me in many ways, and perhaps you will benefit in the same way I did. I wish I could thank you all enough for praying for Keegan - and all of us.


Lord, you have probed me, you know me: you know when I sit and stand; you understand my thoughts. My travels and my rest you mark; with all my ways you are familiar. Even before a word is on my tongue, Lord, you know it all. Behind and before you encircle me and rest your hand upon me. Such knowledge is beyond me, far too lofty for me to reach.

Where can I hide from your spirit? from your presence, where can I flee? If I ascend to the heavens, you are there; if I lie down in Sheol, you are there too. If I fly with the wings of dawn and alight beyond the sea, even there your hand will guide me, your right hand hold me fast. If I say, "surely darkness shall hide me, and night shall be my light" - Darkness is not dark for you, and night shines as teh day. Darkness and light are but one.

You formed my inmost being, you knit me in my mother's womb. I praise you, so wonderfully you made me; wonderful are your works! My very self you knew; my bones were not hidden from you. When I was being made in secret, fashioned as in the depths of the earth, Your eyes foresaw my actions; in your book all are written down; my days were shaped before one came to be.

How precious to me are your designs, O God; how vast the sum of them! Were I to count, they would outnumber the sands; to finish, I would need eternity.