Monday update

Well, try as we might, we couldn’t keep Monday from coming again.  Funny how it always seems to come around this time of week.  Bummer.

Evidently, Keegan’s tummy is not fond of Mondays either.  We stayed the course.  We made no changes, and yet, today was much worse than yesterday as far as output goes.  If nothing else, it made me very glad that we advocated for not making any more changes in Keegan’s feeds until he shows continued, sustained improvement.  Keegan’s cardiothoracic surgeon stopped by, and she wholeheartedly agreed.  She said there was no way to expect he would recover if we kept “letting the bull into the china shop.”  I couldn’t agree more.  Our plan now is to hold his tube feeds at 24 hours per day of 10cc/hour for the immediate future (a week or more?).  That’s such a small amount for his body weight that it’s considered just enough of a basic drip to keep his stomach and intestines “alive” as he heals.

Keegan’s labs are fairly stable now.  The IgG trial is over tomorrow evening.  I won’t say I’m wholly disappointed in that one, but I do wish it had been the golden ticket we’d for.  His stool cultures came back negative for rotavirus finally today and negative for c-diff too.  The c-diff isn’t surprising.  It’s so prone to false negatives, that you aren’t even given the all-clear until you’ve had consecutive negatives over the course of three 24-hour periods.  We were excited to see the negative rotavirus.  If you remember, it should come back negative while on the anti-parisitic drug, but Keegan’s was still coming back positive after two full courses.  This is definitely an improvement, but we will continue the drug treatment for the next two weeks to be sure.

Where does that put us?  Working on advancing Keegan’s tube feeds and weaning the TPN (IV nutrition) for the most part.  Generally, the doctors would like to see him on full tube feeds and off the TPN completely before sending him home.  Gray and I initially said we’d push to go home on 12 hours of TPN.  Right now, he’s on 20 hours of TPN and just enough tube feeds to keep his stomach from atrophy.  It could be a month or more of sitting in this room on contact and neutropenic isolation before that happens.  We’re not okay with that.  We’ve asked for Keegan’s nutritional needs to be revevaluated and determine into just how few hours we can concentrate his TPN.  We’re hoping for 16, but I’d be okay wtih 24 if it meant going home. 

So, long story short – barring any other issues cropping up, the next two days will be filled with getting our home health situated.  We’re hoping to bring Keegan home by Wednsday or Thursday.  This is going to be an extreme challenge for us at home.  The demands of Keegan’s line, TPN, meds, and tube feeds, all while keeping him mobile, entertained, on time to appintments and therapies (and don’t forget Audrey) will be daunting at least.  But it is worth it to be in our own home as a family again. 

We would greatly appreciate your prayers as we get the ball rolling on this.  We are ready to be home.  Thank you so very much.