Tomorrow will be a busy day for Keegan. He has a GI appointment, IV infusion of the new immunosuppressant, pentamadine breathing treatment, weight, labs, and port reaccess. Most of it is routine except for the GI appointment. Keegan will probably disown me one day for talking about all his GI problems, but that's a problem for another day! The next paragraph is mostly about bodily functions, so consider yourself warned.
You may remember that as of Thanksgiving day, we were talking to Keegan's GI doctor about the possible need to admit him for strict tube feeds of his specialty formula because of frequent, mucousy loose stools again. We were trying to be proactive in addressing this problem with what had previously worked (elecare formula and an oral antibiotic called vancomycin) before it got so bad that he stopped eating and started losing weight. Then that little thing about kidney failure cropped up, and the GI stuff took a back seat. Dialysis can often make you constipated, so Keegan has been on a daily dose of a stool softener since then. Despite that, the fact that he is on 100% 24-hour tube feeds, and the fact that he has a history of chronic diarrhea, he was only actually working something out every 2.5 days or so, but it is still diarrhea when it does come out. Today, we brought him into the hospital and ran an abdominal scan in radiology to see if we could tell what was going on. It showed that Keegan was pretty "backed up" as it were. However, we know that what is in there is completely loose and mucousy, so why isn't it coming out? Despite being so "full", he isn't gaining weight even though he's on the full tube feeds. Right after I got the call from the nurse about the test results, he had a blow-out (mainly due to the fact that the diaper wasn't the right size rather than volume), and the "quality" was even worse. He spent most of the rest of the evening in his tripod stance (hands and feet on the ground, dragging his head across the carpet), which we saw a lot in the past as a sign of discomfort for him.
Needless to say, we will brainstorm all this information with the GI doctor tomorrow and hopefully leave with a plan for Keegan. The enigma that has become Keegan's GI system is maddening to say the least. Your prayers for wisdom and guidance tomorrow would be much appreciated. Thanks so much. We will update tomorrow night about how the day went.
I heard this song on the radio this morning, and I pulled part of this post up from last year. It's still one of my favorites. Christ did come for us, to live as we do and to die so that we might have eternal life. He came to experience our pain and sorrow, to give us hope for the future. Emmanuel - God with us. But I find even greater comfort in considering the humanity of his earthly parents - their grief, their pride, their sorrow, their happiness...their hope.
FROM DECEMBER 22, 2009:
Since Keegan was born, I have to admit that the Christmas season leaves me thinking more about Mary and Joseph than ever before. Lately, I've been quoting the adage "I know God won't give me anything I can't handle, but I wish He didn't trust me so much!" I can't help but think that Mary or Joseph must have coined that very phrase!! Can you imagine the anxiety Mary must have had as an unwed mother, accused of breaking the vows of her betrothal? Can you imagine how she might have agonized over the fate of her son? I think I have a little bit better understanding now, not only just as a parent but as the mother of a child with an uncertain future. What about Joseph? Did he worry how he would provide for this new family? Did he lose sleep about whether he would be able to protect his son, keep him from pain, or simply how long he would be blessed to have him to hold? I hope he and Mary worried about these things...it would reassure me that I'm not alone. But I know their faith was stronger than mine. I pray that I can learn to ask less questions of God and trust more, to place my faith in God's plan, to respond as Mary - "I am the servant of the Lord...may it be to me as you have said." (Luke 1:38)
JOSEPH'S LULLABY - Mercy Me
Go to sleep my son; this manger for your bed.
You have a long road before you; rest your little head.
Can you feel the weight of your glory? Do you understand the price?
Does the Father guard your heart for now so you can sleep tonight?
Go to sleep my son; go and chase your dreams.
The world can wait for one more moment; go and sleep in peace.
I believe the glory of heaven is lying in my arms tonight.
Lord, I ask that He for just this moment simply be my child.
Go to sleep my son. Baby, close your eyes.
Soon enough, you'll save the day, but for now, dear child of mine,
Oh my Jesus, sleep tight.