Sunday, April 17, 2011

Whew

That's my general sentiment at the end of just about everyday and when sitting down to think about writing this post!  The "plan" from the last update is still in place, but not all the pieces have been set into motion yet. 

Here's a little breakdown of the last five days:
  • Keegan's abdominal x-ray on Wednesday morning showed that he was, in fact, full of his usual diarrhea.  This caused a touch of concern.  First, why wasn't he able to void it as usual, and second, the risk of bacteremia arising from stool sitting in his colon.  We decided to stop the prescription-grade probiotic we had started the week prior, in case it was causing a translocation of bacteria or any other adverse side effects.  Then on Thursday, we gave him an extra dose of a medication to help him empty.  Let's just say the effects were immediate....and not pretty.  Read on.
  • The rest of Wednesday was spent at the hospital getting infusions, a breathing treatment, and a new needle in his port.  It was supposed to include labs, but in a truly exhausted lapse of coordination on my part, we forgot those.  Which necessitated a return trip to Children's on Thursday.  Sigh.
  • By Thursday, we decided to give Keegan a little help in getting things moving, so to speak.  He was already having a rough week and not feeling up to par.  Most mornings, it was difficult to get him moving.  He would spend most of the day lying on the floor or couch with his puppy and blanket.  The brunt of his GI problems hit while we were at the hospital Thursday afternoon having labs drawn and meeting with his doctor, since he was clearly not himself.  His labs showed he was probably fighting something viral, so all we could do was wait it out.  I guess if you're going to have a big blow-out, it might as well happen in the GI doctor's office.  We must have looked highly amusing as I shuffled Keegan out the door in dirty clothes, holding his pump, and Audrey screaming because she was WAY overdue for her lunch.  Double sigh.
  • Friday, things were seemingly on their way back to Keegan's version of normal...until he fell off the office chair while playing before bed.  We kissed the knee he was clutching afterward and thought all was fine.  After his bath (you know, about 10 minutes before he usually is sound asleep), we notice his port needle is dislodged, not working, and bleeding.  We called one of our wonderful neighbors for an extra set of hands and were able to get him reaccessed quickly.  Crisis one averted.
  • The weekend was rather calm, except for a visit from the Easter Bunny (aka Aunt Alex) to dye eggs.  Keegan was not very keen on just about every part of the dyeing process, but we made it work.  (Pictures to follow shortly.)  I have to say, it was beyond frustrating that we could not even enjoy a traditional holiday craft that children his age should be able to do.  I know he has had so many challenges and not to expect anything grand.  I just wish every little thing wasn't such a stark reminder of where he is, where he should be, and what he's been through.
  • This morning, we realized his port needle was soaked with blood and drainage.  It appears that there was some trauma from his fall on Friday, but we once again were able to get him reaccessed with a little help from Big Daddy.  I hate sticking a needle in my son's chest, but I really hate having to do it twice in three days.
As you can probably tell, I'm not exactly in the mood for that long-awaited detailed post I keep talking about.  This is about as good as you're going to get for now.

Ok, so that's the low-down on the last few days.  Tomorrow Keegan is scheduled for an upper GI and small bowel follow-through floroscopy.  We have to be there at 8:15am, and with Keegan's delayed gastric emptying, we could be there all day.  This won't make sense to many of you, and for that, I apologize.  We have noticed a severe increase in the amount of residuals vented out of Keegan's g-tube the last few weeks.  He is only receiving 10ml over the course of an entire hour of elecare formula feeds.  So, theoretically, he should never really have more than 5ml or so in his tummy of formula and/or gastric acid.  At any given time, he has more than 40cc in his tummy.  Where is it coming from?  Is it mostly formula or is bile coming up into his stomach from his intestines?  We're not sure, but that is a major issue we're trying to unearth in the upcoming tests.

I anticipate a call from the surgical scheduler tomorrow to get a date for Keegan's upper endoscopy and colonoscopy with biopsies and electron miconography.  (That's a mouthful.)  When those are over, we may repeat his gastric emptying study.  At the end of all these tests, we will see what we have learned, if anything, and decide where to go or what to do at that point. 

At the risk of sounding like a broken record, we would greatly appreciate your prayers for clarity and information from the test tomorrow.  We are so used to and tired of knowing something is clearly wrong with Keegan and not having test results to tell us what it is or how to help.  We are doing our best to advocate for Keegan and take every step to improve his quality of life.  Without a clear idea of how to do that, we feel we're sinking in the quicksand of his care.  The next week or two are going to be busy and trying, at best.  We are so thankful for your support and prayers during this time.  I will try my hardest to keep this blog updated as we learn (or if we learn) anything.  Thank you again.  We are beyond blessed and humbled by your love and compassion.

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