Monday, 11 June 2012

Back to Reality

      Today I picked up Jacob from a respite program in London.  He was there since last Wednesday morning.  The whole family misses him greatly when he's gone, but it's good for our family to have some undivided quality time.  We try to do something fun with the kids at those times, which we can't do when Jacob is at home.  Jacob goes to two homes for respite.  Each has there pros and cons.  Where he went this time, a paediatrician is there all day, and on-call most of the time she's not there.  Talk about dedication!!  The nurses are an invaluable resource as they solely work with special needs children.  The paediatrician is such an asset also, as she can spend time with Jacob, trying to diagnose issues.  She found out this time, that much of Jacob's reflux is happening because he's constantly in pain.  As a trial they gave him 48 hours of pain meds and he showed a great improvement:)  The only's a band aid fix.  He can't be on Tylenol and Advil every 4 hours for too long. 

       Unfortunately, we brought home a sick boy:(  He's coughing a lot.  His blood oxygen level is just at the minimum requirement.  He's more irritable than normal.  He's having super sweats.   The good thing though, he's not running a fever.  Hopefully he'll be able to ward this off with no significant side effects.  Providentially we have our tried and true nurse tonight!

      Today I was talking with a nurse practitioner at the hospital regarding a game plan on Jacob's feeding tube.  We are just waiting for a date that Jacob will have his tube upsized.  This is a fairly simple routine.  He does not have to be sedated, they just work with local freezing.  The goal is to upsize now, and then we are only one size away from our final goal - a combination tube.  He would be fed in the small intestine, but we can vent his stomach of gas through the tube which is in the stomach.  This combination tube is not real popular yet, as it came out fairly recently.  Paul and I feel for Jacob this tube will help with much of his discomfort, so we're willing to try it.  I feel this decision was long in coming, but in due time, the way has been made clear.

     We are blessed to be part of a church family.  As the days go on, we realize more and more what a blessing this is to us.   They provide moral support, pray for us, encourage us when things are rough and they point us to the One who we must have our eyes fixed on at all time (how I fall short, I so easily see the waves coming over me!)  They also provide us with a meal a week.  Sometimes it comes steaming through our doors, sometimes it gets dropped off earlier in the day, and we can warm it up when it works for us.  When Jacob is having 'a' day (like today,) a meal is more than appreciated.  A few weeks ago Jacob was having an ok day, so I thought I'd do something really special for supper (bbq'd burgers, yes, that's as special as I can get somedays.)  Thankfully our family has adapted to 'whatever works for Mom.'  So, I go out to put the burgers on, and instantly Jacob starts crying.  I thought, I'll let him be for a a minute and see whether or not he'll calm himself.  It didn't work!  Before long, he was gasping for air, choking on his secretions and getting more worked up by the minute.  Needless to say, the burgers were not done to perfection!   A meal supplied is so appreciated because of those hectic times.  Thank you for your many delicious meals!!  We feel it is one way that God provides for us. 

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