Sunday, January 9, 2011

Update

I hope that I'm better about updating the blog in the new year than once a week, but I make no promises at this point!  It has been another long week in the Harrison house, with some long nights and early mornings thrown in.  There's something to be said for when physical and mental exhaustion meet, but I'm a little too exhausted to figure out what that is at the moment.  So on to the update...and for my own sanity, if nothing else, I think bullet points will work best. 
  • From a GI standpoint, there has been little change in Keegan this week.  Even the days we didn't try to add a new food, he didn't do too well.  The days we did were worse.  So, we just keep our heads down and hope next week will be better.  He is still on 20 hours of tube feeds and eating mainly crackers/dry carbs, fruits, and vegetables.  That is when we can actually get him to eat, of course.  And no, we don't believe the tube feeds are interfering with his hunger or desire to eat.  He only gets about 2 ounces of formula over the course of an entire hour.  Until we see improvement in what is coming out, we aren't going to push him too much or too fast.  We will start concentrating his rate to reduce the overall volume and hours once we see a bit more sustained improvement.  If that is still not evident in the next week or so, we will add the oral antibiotic he has been on before to see if that helps.
  • Over the course of the last week or so, we started noticing a marked decrease in Keegan's urine output.  He never got back to the level he was before the kidney failure, but it was definitely better when we got home from the hospital before Christmas.  Even though he is still on a regular course of diuretics, we slowly saw his urine output decrease, and he started to get more and more swollen.  His blood pressures were creeping up each day, as was his heartrate.  Thursday, Keegan was scheduled for his normal weight check at the GI clinic.  And his weight was up over a kilogram in 10 days (roughly 2.5 pounds).  Obviously, this got us and his medical team a little concerned.  We brought him in for a full set of labs Friday morning, but they looked okay.  Then we called the dietician to make sure we weren't inadvertently giving him too many calories in his tube feeds.  Nope - she calculated that he was probably right at or below his caloric needs daily.  So, we had to assume that the weight gain was fluid retention from his kidneys not clearing enough.  We gave him some extra lasix (diuretic) this weekend to give his kidneys a good "kick in the pants".  We finally saw some nice, big wet diapers last night and through today, and his weight was going back down on our home scale.  We also saw a bit of improvement in his blood pressure and heartrate.
  • It appears that what urine he is making is filtering well enough to keep the level of toxins in his body down.  However, it is also quite obvious that his kidneys are not doing a very good job of producing enough to keep his fluid levels in check.  Both are very important jobs of the kidneys, so we are anxious to speak with his nephrologist this week about what is going on and what to expect.
  • Keegan and Audrey have both developed runny noses, and it's hard to tell whether it's viral or allergies.  It's definitely not helped them get good sleep, and we think Keegan was so tired that he was actually starting to wake up earlier and earlier.  By 10:30am this morning, he was fairly exhausted looking.  We let him take a 30 minute nap then (usually a death-nail to getting him to sleep at night), but he went to sleep on time and fairly easily tonight.  Let's hope this is the start of a better night for all of us.
  • Still no school, but he did start back in at therapy this week.  His speech is improving slowly, but we are at a bit of a standstill with feeding until he can actually eat more.  He started to show some "pretend play" this week.  About a year behind on that one, but his therapists were SO encouraged that it is a step in the right direction.  And so are we!! 
Keegan will spend most of the day at the hospital on Thursday with clinic visits to his transplant team and the nephrologist (kidney doctor).  I don't want to speak about the course of this week's events without consulting with his team, but Gray and I were fully convinced Friday that we were heading right back inpatient.  We were so happy to be able to address the problem at home...for now.  Just one month ago, we were being told that Keegan would likely still be on dialysis, so having to give him extra medications to help his kidney function isn't surprising or the worst situation.  It's just disappointing, to say the least. 

If we are honest with you (and frankly, with ourselves), the wait-and-see is starting to wear us down.  We are and always have been very vigilant in watching for changes in Keegan's vitals, behaviors, and appearance.  That's increased about 500% in the last few weeks.  It's never been easy to ignore that huge ticking time bomb hanging above our heads simply due to the fact that Keegan is a heart transplant patient.  Being paranoid is exhausting anyway, but when the paranoia is actually rooted in reality, it makes it that much more difficult to stay grounded in the good things - our many blessings, the Lord's promises, all of Keegan's progress, Audrey's zeal for life, Keegan's relentless demands for hugs and kisses!!  We are human afterall, and we are prone to weakness.  Thank you for being there to support us when the weakness starts to overcome our gratitude.

I apologize for the long post, and I hope I didn't lose too many of you along the way.  Stay warm and dry out there in this wintry weather.  We will post more through the week as we know it.

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